Not That Autistic?

I needed to go out this morning to do a few jobs. Go to the bank, bit of shopping for the next couple of days and for the weekend when I’m doing stuff (“stuff” needs a bit of preparation), petrol in the car, and so on.

So I left the flat feeling pretty much as normal as I ever feel. I got in the car, drove to the first car park, found a spot, parked, got out, and walked, briskly as always, through town to the bank.

And as I went, I thought “I’m out now, and, really, actually, seem pretty much like a normal person. Maybe I’m not that autistic after all?”

Then I got to the bank. There was a queue. And the lights were bright even through my darkest glasses. I stood in the queue moving from foot to foot, chewing my fingers, scratching my head, and occasionally twirling my hands.

Then I went to look at coffee shop number one. It was full. There was a queue. I decided to give it a miss.

Then I went to supermarket number one. Where I bought the same food that I’ve been buying for several weeks now, even though I’m really rather bored of it. But somehow buying and eating anything else during the normal daily routine seems so desperately desperately WRONG. So I bought the same stuff as I usually do.

Then I went to look at coffee shop number two. It was also deemed too full with a queue. I decided that it wasn’t for me.

Then I went to supermarket number two. Where I bought yet more of the same things I buy every time. Where I once again went to the auto checkouts. Where I flapped my hands at the nuts because I couldn’t see some the same as I’d had last time and had to get the closest but they were different (of course they were, it was a different supermarket, but I had to convince my brain, actively, that these nuts would be OK, even though they weren’t those nuts).

Then I went to get petrol. There was a woman in the petrol station proclaiming she’d lost her pen in a very loud screechy voice. I wanted to put my ear plugs in because the screeching was so painful.

Then I got home. And a workman had parked in our private, numbered, parking spot. The notion of not being able to put the car back in the right place sent my anxiety spiralling. I asked him politely to move and instead of simply doing so, he argued back with me and I was forced to debate with him to get my own parking spot. I finally did manage to park my car in my own spot, but by that time the spoons had run out.

Then I had a complete meltdown in the car – screaming, bashing, tears, and so on.

Eventually I calmed down sufficiently to get the shopping from the car to the flat and to rant somewhat on facebook where I got support from an ever-patient bunch of friends.

Then I realised I’d lost my ability to speak. It’ll probably be back later – it usually is.

I set off this morning thinking I was “not that autistic”!

Hmmm!

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Busy and Hot

When I woke for the first time today, at around four in the morning, I asked myself what I was going to do with the day. I had all sorts of plans in my head for things I might do, places I might go, what I might write. As it is, I eventually fell asleep again, and have now only just surfaced. It is nearly midday and I know that the plans I made in my head at four this morning are, on the whole, not going to happen.

And after a brief moment of beating myself up about it, I suddenly realised why I was so exhausted and why I haven’t written a blog post since Sunday and why I didn’t write the one I wanted to on Tuesday or the others that I still want to write (one in response to something) and why my admin is behind and I owe people messages and e-mails and so on – I have been busy!

The last two weekends I’ve been playing music. It’s been amazing and enjoyable, and brilliant to meet up with friends (old and new) and to play under a conductor who’s an absolute pleasure to work with. The concert was on Saturday night, so I was pretty wiped out on Sunday, but felt moved to write the rather rambling blog post on pride anyway. Monday I went for a short run, which, given my recent running activity, was a big deal. Tuesday I went to visit my best friend. Wednesday I went for a coffee then went to buy a few groceries.

And all this at temperatures above 30 degrees, which we’re really not used to round here, and which drain my energy rapidly. Furthermore, there is no airflow through our flat, so the only way to stop the hot air stagnating and to get any sort of breeze is to use fans. The noise of the fans is really not good for me and overloads me pretty much to the point of meltdown within a fairly short space of time.

Maybe, to most people, that level of activity and a bit of hot weather really wouldn’t be a big deal. When I think back to the “me” of the past, before two huge burnouts, before mental illness was even identified, that “me” would have looked at the “me” of now and thought myself utterly pathetic. I’d have been unable to comprehend why I couldn’t just get my act together and, with enough willpower, just get on with it.

Of course, the “me” of the past being like that, forcing myself to live that “normal” life for so long, doing what was expected of me and using vast amounts of energy and willpower to do so (largely because I assumed everyone else was doing the same), is a large part of what has caused me to have two major burnouts and to have arrived where I am now, with rather depleted functionality and very low energy levels.

Fortunately the “me” of now is starting to learn. And, a few minutes before writing this post, I realised not how LITTLE I’ve done over the last few days, but how MUCH I’ve actually done. And, I had, once again, to remind myself that my mind works a bit differently from most people’s and that I need more downtime, more space, and that things that come fairly easily to many folk, are actually rather challenging and energy consuming for me.

So the plans that I made at four this morning are now dropped, forgotten. Today I need to focus on self-care. I need to stay at home, even though the temperature in the flat is still 28.5 degrees and the place smells stagnant and nasty because neither of us has had the energy to do any serious cleaning and there’s no airflow because it’s so still. It’s not ideal, but it’s not a choice, because I need the solitude. I need not to go through the anxiety cycle of going out and working what to say to people and so on.

If, and only if, I have enough energy beyond that required for basic self care, I shall try to sort out the jobs lists and my diary, and sort out what I need to do, even if I don’t actually do it, but I expect it won’t get much further than that. As I’ve increased my levels of activity, and as I start to gain a bit of functionality as I emerge from burnout and from the whole “discovering I was autistic and getting diagnosed” thing and all the shock and relief and complete re-evaluation of my life, it’s tempting to think that I can just “go back to normal” without any consequences. But, of course, that isn’t the case.

And, interestingly, the blog post I wanted to write on Tuesday was the one outlining how I now am, four months after my diagnosis (it was the four month anniversary on Tuesday). And I’ve sort of gone and written it anyway – at my second follow up appointment it was noted that the increase in activity and my “recovery” carries a price, and that I need to remember that. This week that price has been that my head has become more and more muddled, I’ve struggled to hold conversations and to form words, I’ve struggled more with basic stuff at home, I’ve retreated once again into eating the same thing every day, and my decision-making capabilities have plummeted.

My level of satisfaction with life has also dropped – despite what might be perceived by someone from the outside (I’ve been seen playing music, going for a run, visiting a friend, and having a coffee) possibly indicating that I am happier with life and doing more “enjoyable” things, I’ve actually felt less happy, more frustrated, and generally more anxious. Yes, I’m really pleased that I got out to play in a superb concert and that I went for a run etc. because these are things I love doing, but they still drain my batteries, and a combination of the heat and trying to fit in other stuff has meant I haven’t been able to recharge properly.

Ironically, a viewer from outside who observed how little I’ve stimmed over the last few days might decide that it’s some sort of “improvement” and some sort of “your autism’s getting better” thing. In fact, the reverse is true. I desperately want to rock hard on the sofa for a bit, to wrap myself in compression, and to hide under my fleece blanket – these are all good and lovely things and part of how I cope with having to deal with the outside world. But I can’t cope with doing them at the moment because it is TOO HOT. So not only am I dealing with bad sensory stuff (noise of fans, feeling sweaty and nasty, smells stronger) because of the heat, I can’t mitigate with the good stuff.

So, in an odd way, I’ve looked more “normal” over the last few days, but the effect from inside is that I’m feeling increasingly dysfunctional and anxious and edgy and irritable. This “how autistic people look vs how they feel” thing is something I’m increasingly thinking about and want to write about some day, because I’m beginning to get the impression that the two are much more likely to be inversely than directly correlated.

In the meantime, I do observe that four months have passed since diagnosis, and that life is continuing to change. The people who wrote Tiny Glimmers back in January and Eight Weeks On back in April would have been amazed by what I have just written above and by what I’ve done in the last few weeks, so even where I’m still failing and still not achieving what I want to achieve (that will probably always be the case for me as my natural inclination is to constantly aim for more and to push to achieve goals and so on), I’m actually achieving much more than I was, which is, of course, progress.

But today “progress” will be achieved by resting and gentle tasks and self care, not by pushing on through. That way, I hope that I’ll be able to start to recharge my batteries enough to be able to do more running and music and socialising and to be able to think clearly enough to deal with admin and communication and to write more of the blog posts that I’d like to write!

Pride

Today is, the internet informs me, Autistic Pride Day!

This is another of those things that, until this year, I wasn’t aware existed. Just like autism awareness day / week / month or whatever, I was pretty much oblivious to all of this stuff, just as I was oblivious to the fact that I was, it turned out, autistic!

I really should pay more attention!

I’m really not sure I can claim to be proud to be autistic, since being autistic was an entirely effortless process on my part – all I had to do was be born! The processes that meant I have an autistic brain went on all by themselves without me having to do anything at all – I just existed in the only way I knew how!

I’m not quite sure even that I can be proud of surviving this far while working to survive in a world that turns out to be a bit more challenging for me than it is for many others. I’ve had several times of trying not to survive and my survival through them has been entirely down to luck. I suspect I only coped with such high anxiety levels because, to me, they were just normal!

Neither do I feel that I have yet done anything much else to be proud of, although I’m at least sufficiently aware to know that some of my friends will tell me off and say “Yes, but you do xyz and it’s amazing…” and so on! I’m still working on this bit, and it’s probably the area where I have the most internalised ableism towards myself – I know I haven’t fully dealt with the issues discussed in Expectations Gone and Career Snake!, and that that’s still very much work in progress.

Furthermore, the society in which I live generally measures value in terms of financial success – it’s all very well being told “well, you write a nice blog” or “that was lovely that you played some music”, but if I show up at the checkout in the supermarket and tell them that I’d like to pay for my food with “nice comments”, then I’ll go hungry. The part of me that was brought up to believe that I would earn my own money and be “successful” in that way is still fighting with the part of me that knows just how little I contribute and how I am entirely dependent upon handouts from others to survive. I can’t even claim to be pulling my weight domestically – I don’t raise kids because I couldn’t have them, and my husband does about 90% of the domestic work in the flat!

Anyway, I digress. This is supposed to be about pride. And, perhaps, pride in a rather different sense, but because of the way my mind works it’s going through all sorts of “pride” things and I now have a video clip going through my head that shows a large group of rather handsome lions roaming around a grassland somewhere in what is probably Africa! But I’m not supposed to be blogging about lions!

So, returning to what the day is supposed to mean, it seems that it’s meant to be some sort of celebration of neurodiversity. There are probably marches and things and parties or whatever, that I’m unlikely ever to go to because I’m not really a marching sort of a person – more of a blogging sort apparently!

It also seems that one of the basic tenets of the movement is that neurodiversity in general (and presumably autism in particular) is part of a natural variation in human existence, rather than some deviation from the norm that requires a “cure” (I’m still at a loss as to what people who discuss “curing” autism can possibly mean – it just makes no sense, given that it isn’t an illness or a disease).

It also seems to emphasise the notion of autism as a “difference” rather than a “disability”. I’m still forming my ideas about difference and disability, and still getting to grips with the whole “medical model” and “societal model” thing. I class myself as disabled (and have done for years, ever since it became apparent how my mental health issues affected my functioning), but I’m still trying to figure out to what extent the disabling effects of me being autistic and mentally ill are a result of my inability to function in certain ways and to what extent they are a result of the society in which I live. I haven’t even managed to sort out what bits of my “disability” are down to me being autistic and what bits are the result of mental illness. There’s a lot of work still to do.

The more I think about all this, the more I realise I don’t know, and the more I feel like I’m only just scratching the surface of issues about minority groups, privilege or lack of it, models of disability and so on. I’m a musician and scientist, not a sociologist, and I’m a bit out of my depth at the moment. There is a lot of observation and learning and thinking still to be done before I can really start to analyse it all.

The other basic tenet of the autistic pride / neurodiversity movement seems to be that it is led by autistic people themselves and is not a day for organisations led by non-autistics! This, I really hope, is something that will prosper. It’s so true that so much autism research and so on is still led by non-autistics and that there is still such a long way to go in really understanding (as I discovered at the recent conference) what it’s like to live as an autistic person in a world that is, for want of a better expression, distinctly sub-optimal for our neurology!

Of course, given the situation I’m now in, I’m actually rather fascinated to discover what it might be like NOT to be autistic – I feel, to a large extent, that I’m just me and always have been, and what I actually discovered when I found out I was autistic was not that I was different, but that 90+% of the rest of the world was different! From my perspective my autism diagnosis was effectively the same thing as most of the rest of the world receiving a diagnosis of allism!

I’d really like to spend a day living with a neurotypical head to see what it was like because it would be fascinating to compare with my own experience. Are there really people who sit still on chairs and don’t find it deeply exhausting and uncomfortable? Is it actually true that there are folk who can chat in small groups without trying consciously to compute every single thing they say and work out when they should contribute to the conversation? I’d be fascinated to discover – though I wouldn’t want to commit to more than a day because I’ve been used to my own head for quite a long time and there might be all sorts of things about my neurology that I’d suddenly miss – I don’t even know at this stage what they might be because I’m so used to my normal being my normal and so unaware of how other types of brains might work! Perhaps the fact that I worry little about things that seem to vex many people is part of my being autistic and I’d really miss that freedom of thought? Who knows? But I do know that I’ve discovered a contentment since getting my autism diagnosis that’s rather nice and that I’m not in a hurry to mess with it!

Anyway, I digress again. And now return to the tenet of autistic people themselves having a voice and being part of the discussion of neurodiversity. That is, of course, part of something that I do manage to do a bit (being a blogger, not a marcher), and, as I discussed in my final conference blog post, maybe an area to explore for the future. Who knows what I’ll be able to do, or what impact it might or might not have, but it’s a possible direction for the future and if I can ultimately be helpful to other members of the autistic community, which I have suddenly, and rather unexpectedly, become part of, then maybe that really will be something to be proud of!

Still Very New

A year ago
Things had started
To go wrong.
Depression maybe?
Anxiety
Growing fast.
Things had not been right
For several months.
I didn’t know why.
Autism was not
Even considered.
I was just
An anxious eccentric.

Ten months ago
People started
To suggest that I might
Be autistic.
Which, I have to admit,
Was a bit on the weird side
Because as far as I knew
I was just me.

Nine months ago
After a bit of research
And discovery
And, well, if I’m honest,
Having my mind blown somewhat
By the whole concept
And
In the face of so much evidence
That to deny it
Would be a supreme act
Of illogicality
I accepted
And I wrote
“I am autistic”
For the first time.
And started to believe
That maybe
All my failures
Were not my fault
And I wasn’t lazy
After all.

Seven months ago
The first assessment.
Disaster, meltdown, damage.
Invalidation.
Despair
And serious thoughts
About whether I could even
Go on living.
My whole identity
Fallen to pieces
My whole life
A pointless waste.
Feeling guilty
Simply for
Breathing the air.

Six months ago
I had started to blog
And to engage
With other people.
Figuring that even
If everyone thought
I was a total idiot
Then maybe, just maybe,
That was better
Than being dead.
My logic being
That being a friendless idiot
Has potential for reversal
Whereas being dead
Does not.

Five months ago
A second referral,
Elsewhere.
We had to work for it
Quite hard,
Never giving up.

Four months ago
DIAGNOSIS!
Officially autistic.
Life changed
For ever.
Even though
It was already known.
I needed
Confirmation
Validation.
Big relief.
Mysteries solved.
A new confidence.
New hope.

Two months ago
Life gradually improving.
Slowly.
The first signs
That maybe
Burnout
Wouldn’t be for ever.
Acceptance
Learning
Gently starting
To rebuild
My shattered life.

And now
I continue to oscillate.
Part of me wants
To be an expert
An advocate,
And to learn
And educate
And debate the issues
And to be a confident
Articulate
(Most of the time)
Authentic
Autistic.
It’s not very difficult for me
To behave in ways
That are obviously autistic
All I have to do
Is stop trying not to!
But
Part of me still believes
That I don’t have the knowledge
Or abilities
For all of this
And that I’m out of my depth.
Because
I’m just a small person
Trying to figure all this out
And sometimes
I wish life
Would just
Get back to normal.
Though, to be honest,
I’m really not sure what “normal”
Even means any more.
Why is this all happening
To me?
I do not have
All the answers.
I just want to hide.
It all feels so uncertain.
I feel insecure.
Not confident.
Is the confident autistic
Yet another act?
My identity continues
To wobble
On its axis.
Trying to sort what is
Genuinely me
While maintaining
A person
Who can survive
In society.

Balance.

Difficult.

So I look back.
Two months
Four months
Five months
Six months
Seven months
Nine months
Ten months
A year

And I remind myself
That autistic brains like mine
Need time to cope
With change.

I have years of lived experience
I learn fast.
Yes.
But I also struggle.
And I need time
And space.

Looking back
At just how much has happened
In less than a year
Is a good reminder.
That I don’t have to have
All the answers
Yet
Because, for me,
All this
Is
Still
Very
New.

Coffee Please!

Yesterday I shared an article on my facebook page, along with a few of my thoughts and a few of my husband’s thoughts. Several of my friends made comments, and what struck me was the difference between the comments from my autistic and introvert friends and my non-autistic and extrovert friends. I was going to reply to a couple of the comments on the thread, but, as the reply formed in my head, I realised it was really much too long for a facebook comment, so I’m now turning it into a blog post instead!

The original article had started with a picture of a board outside a coffee shop, stating that customers who went in and said “Small coffee” would be charged $5, those who said “Small coffee please” would be charged $3, and those who said “Good morning, how are you, please could I have a small coffee” would be charged $1 (or something like that – the values and exact statements might have been different, but the sentiment is the same). The point of the article was that baristas work damn hard for very little money and that they are, apparently, grateful for recognition in the form of people saying please and exchanging the kind of small talk pleasantries that strike terror into the souls of those of us who are neurodivergent.

And so, of course, the article had been picked up in a number of neurodivergent groups and cited as “ableism”, and I eventually decided to share it on my wall despite the potential for triggering and using up valuable spoons and energy dealing with the fallout of all those who might accuse me of being rude and having no manners. I shared it with my own short commentary added to that of my husband, who had also shared it. The gist of what I said was “This is the sort of thing that would seriously put me off even going for coffee on days when I’m struggling to cope. The message I receive from it is that the world is not for me. I should stay home because people think I’m rude. It makes me feel like giving up on life” and the gist of what my husband said was “This is why the neurodivergent and those disabled by mental ill health can’t have nice things. When we have dismantled every barrier, “manners” will remain as the last bastion of exclusionary entitlement. How’s about this – everyone with the neurological privilege to demand good manners start campaigning for baristas to be paid the wage they deserve for being the life-giving superstars they are; and for coffee shops to be accessible to those for whom eye contact or social interaction are as draining as thinking.”

Several of my friends had shared the article without any sort of commentary. And a couple said so on my thread and said that the difficulties autistic or very introverted people might have with such things hadn’t even occurred to them. This was not unexpected – if you are able to speak without rehearsal and remembering to use words such as “please” is something you don’t have to do consciously, with effort, every single time you do it, because you know, for some reason, that people like that sort of thing, then it wouldn’t occur to you that a sign outside a coffee shop telling you that you have to pay more for coffee because you struggle with social codes and so on, would be, on some days, sufficient to make you burst into tears and vow to give up coffee for ever because the whole business of trying to get it was just so stressful and you were so frightened of getting it wrong (and, of course, because you can’t hold down a job because of the same issues that cause such stress over buying a coffee, you don’t have enough money to pay the expensive rate if you screw up and get it wrong, which, given that your anxiety levels are by now through the roof, having read the noticeboard and realized that this is going to be a difficult experience on which you will be judged, you probably will).

So, I got to thinking about this, ironically, on the way home from having a coffee at my usual coffee shop (where, thankfully, I know the protocols and I had enough energy to ask for coffee in an appropriate way and because the place is familiar and I always eat the same things for breakfast there were no decisions to be made or other problems to be dealt with (I have, over the years, frequently gone somewhere to try to access food and gone away still unfed because simply asking for food or deciding what to have was too difficult)). I tried to imagine what it might be like to go out for coffee and to be able to just ask for the coffee with a load of fancy language that you hadn’t rehearsed several hundred times in your head during the drive to the place. I couldn’t, of course. Improvised speech seems like an extraordinary concept to me (and I assumed, until last year, that it simply wasn’t something that anyone did – only when I started questioning non-autistic people about their speech rehearsals on the way to social events and when they looked blankly at me and didn’t seem to understand what I was on about, did I realise that there are people who are able to improvise conversations on the spot without getting utterly shattered by it and having to go home and sleep for hours to recover)!

So I translated it to the area in which I am, rather seriously, privileged. My mental health is poor, my executive functioning is shockingly terrible, and my social skills are either lacking (if I’m saving spoons) or practised and exhausting (if I’m masking and doing what I have learnt over the last 40 years is the “correct” thing to do). BUT, I’m physically robust, and fairly fit, and probably of more than average strength for my age. I constantly use the huge privilege of a robust physical body to compensate for my social and mental deficits – at the autism conference I was able to go all day without eating or drinking properly or going to the toilet (If I’d been diabetic or had continence issues that wouldn’t have been the case). I think nothing of walking or jogging several kilometers which means that I can basically avoid using public transport in everyday life – if I have to park the car several miles away from where I’m going then it’s no big deal – I’m great with maps and I can walk a long way (I can even climb over gates having done 90km in an ultramarathon when I’m at my fittest). If I see a big flight of stairs then my first thought is “Wahey, hill training”. This is all because I am massively privileged as far as physical ability is concerned.

And so, just as my non-autistic extrovert friends don’t notice how intimidating signs about “how to ask for coffee” are to me, I skip around town and bumps in the pavement or kerbs or steps or flights of stairs or any of those things don’t even register on my radar unless I consciously think about them. BUT, I constantly remind myself, and am reminded by my friends with physical disabilities (whether they be things such as heart conditions or whether they require wheelchairs just to get around), that these things can be huge obstacles. Maybe I’m at an advantage here, because it’s easy to visualise how difficult it must be for someone in a wheelchair to deal with a step, but much less easy to imagine how difficult it might be to deviate from your usual script when faced with a sign outside a coffee shop?

I absolutely don’t blame those to whom it has never occurred, because for many of them, how could it have – I know it from the inside so it’s easy for me to understand, and one of the reasons I write this blog is to try to explain to others what it’s actually like and to assist with understanding. I’m also all in favour of people not ACTUALLY being rude to other people. The notion of being rude to someone who’s making coffee for me is abhorrent to me – I’m deeply grateful to them for doing something for me that I can’t do myself and for making my day better with a cup of something delicious. Maybe I’m just not always able to express that gratitude as perfectly as I should, according to the original article, be able to? Maybe this is where my natural language differs from that of many other people – my husband brought me an unexpected kebab last night and I didn’t thank him in words – I flapped my hands at him, because that’s the language we use at home, not the conventional language of society that we use consciously when we step out of the door!

I’m running out of words at this point and have now backed myself into a corner and am also desperately worried that I might have offended somebody because I’m not well enough versed in the language of disability to be sure that I haven’t screwed up. If I have, then I apologise profusely, because, contrary to the implications of the original article, if I get it wrong, I really don’t mean to. My lack of eye contact and social interaction with strangers is, at the moment, the only way I can actually manage to get out into the world at all and do anything – it’s a protection mechanism to prevent my mental health disintegrating further than it already has.

The last thoughts I had on my drive home from coffee this morning were of two of the “risk factors” that have been identified on my report following my autism assessment. One stated that I was at significant risk of being misunderstood and thought badly of because my levels of social interaction might cause me to appear rude, and the other stated that in order not to appear rude I was inclined to make huge efforts to follow social codes consciously and that doing so was seriously damaging to my mental health! Over the years I have, of course, tried so hard to get it right that it has left me burnt out and hardly able to function at all.

Anyway, whatever I might have got wrong here, I got one thing right – this really was a bit too long for a comment on a facebook thread!!!

Autistic Haikus

So this morning my
Executive functioning
Is rather broken

Yesterday speech was
Not coming so easily
As it sometimes does

I forget to eat
And I am very rubbish
At preparing food

Looking at eyes of
Most people is not helpful
And feels pretty weird

If I try to be
A non-autistic person
I get exhausted

Sometimes my head can
Have a disaster and ex-
Plode into meltdown

Strip lights are evil
And should be banished from the
Surface of the Earth

I remember things
With patterns and pictures and
Short films in my head

I am not good at
Sitting still or on a chair
Movement is better

My fidget spinner
Is one that glows in the dark
It is very cool

The fridge is sounding
Very very very loud
To my good hearing

Not knowing for years
I was autistic has bro-
Ken my mental health

Learning stuff is cool
I get interested in
Things rather strongly

As a kid I chewed
My school tie but now I have
Proper chewy things

Conversations are
Often rather hard for me
To initiate

I flap my hands and
Flick and twirl my fingers when
I’m stressed or happy

Being diagnosed
Autistic at forty five
Is a big relief

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!