Packing

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

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

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

I digress

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

But

I got it.

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

Two words
Describe it
Perfectly for me

Supportive
And
Traumatic

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

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

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

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

Unsettling support
And
Reassuring trauma.

Where all the feelings get intermingled.

And the routine
Is simultaneously
Comforting and constraining.

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

But I am drawn back

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

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

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

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

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

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

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

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

And now the place is imbued
With heavy significance.

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

The question hurts my brain.

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

That makes me too vulnerable.

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

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

It is all too big.

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

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

Even the packing is a challenge
Right now!

Six Months Public

I don’t have time to write a long blog post right now as today I’m going out into the world to play music, to continue the process of discovering just how much I can push myself to do things and what adaptions I might need in order to be able to live the best life I can, and to keep rebuilding my life, which fell apart so spectacularly in the latter part of 2016.

However, I wanted to post something, to mark the six month anniversary of publishing The Discovery, which was the post in which I disclosed my autistic identity to anyone who cared to read the post. Only two posts preceded it, an introduction, and a bit of background, and I could never have imagined, six months later, just how much I would have learnt and written and connected with other bloggers and people in the autistic community. On that day, back in December, I was, to put it mildly, extremely nervous about what might ensue, and I still, at that stage, had no idea that the responses from most people I know would mainly be of the form “Well, of course you’re autistic, you mean you didn’t know” or “Well that makes total sense”!!!

I wrote about Disclosing Identities back in January, and I stand by what I wrote then. For me, full disclosure has been relatively smooth, although I am still getting back out into the world (like today) and I am still working on getting a smooth and brief script together to talk about being autistic in ways that are most likely to be understood and appropriate when discussing with people out in the world. I’m also still very much at the start of the process of working out what adaptions I might need in order to successfully participate in various activities and not end up having a meltdown or ending up too ill to function.

But, six months on from what was the real start of this blog (and might, at the time, also have been the end of it), things are OK. I am yet to be told that I “can’t be autistic” (or any similar phrase) and I’m still wondering whether that’s because I do, in some ways, fulfil autistic stereotypes (I do rock back and forth quite a lot, I am fairly random with eye contact, I do sometimes have full-blown meltdowns in supermarkets, and, yes, I do like mathematics and find it calming), or whether I’ve just been monstrously lucky to be surrounded by such supportive people!

Whichever way, six months from the nervous day on which I posted that first post, life now feels very very different. Still very much a work in progress, but a long way from how it was back in December.

Clear Air

The storm didn’t really come in the form of a meltdown in the end. I was so exhausted that it morphed into a shutdown instead.

I’d had a really really busy day. The busiest in months. I went to play in a performance of Mendelssohn’s Elijah with a local choral society – playing my viola from time to time is one of the very few things I didn’t abandon completely when burnout hit. The gig entailed a three hour rehearsal in the afternoon, then being hosted at someone’s house for supper, then the concert in the evening, which also lasted nearly three hours.

I’d done a similar gig last December, but declined the supper invitation and spent the intervening time sitting in the car on my own. This time I braved supper – partly, admittedly, because it was done on a “get in touch if you don’t want to have supper” basis this time around and my “getting in touch” abilities are pretty poor at the moment!

So I’d had this massively long full-on day. I’d been totally open about being autistic and having mental health issues (I’m getting slightly better at talking about it all). I’d kept my sunglasses on for most of the day. I’d coped with eating while sitting on a proper chair at a table and even participated in the conversation over supper a bit. I’d left supper slightly early to give myself some space to be alone before the concert. I’d spent most of the interval sitting on the floor, wearing my ear defenders and rocking back and forth. And I had, of course, played all 90 pages of the viola part of Elijah – twice (perversely, although physically very tiring, that was actually the easy bit)!

I got home and downed a few glasses of wine and ate some cheese, then went for a bath.

And then felt exactly as I had done in the pub episode in Sudden Illness.

I suddenly felt absolutely dreadful, sat up in the bath, unable to keep still, and burst into tears.

And this is where what happens now deviates from what used to happen in the past.

In the past, I would have stoically continued, as I did in the pub, to act as “normally” as possible. I might well have ended up being sick, and would probably have got almost no sleep and have spent the night in bed lying awake, shaking, believing myself to have some sort of illness that I couldn’t quite rationalise. I have pushed on and on in such circumstances so many times.

And the result of that pushing has been a continual decline in my mental health, a continual drain on my energy, and the resulting burnouts and erosion of my functioning abilities. Trying to be strong has, in fact, weakened me. “Faking it until I make it” has not worked – in fact, the more I faked it, the less I made it.

So I sat in the bath and cried, and my husband came to investigate and found a distraught mess. He calmed me down and drank the orange juice that I had asked for not long before as I indicated that I couldn’t drink it. And he also realised that my ability to speak was completely gone. Fortunately he’s used to it – and actually rather reassured now that we know I’m autistic, having thought, for the last fifteen years, that when I didn’t speak to him for hours at a time I was actually cross with him for some misdemeanour!

Then I went to bed, and beat my head against the pillow for a bit, before finally settling down to sleep. And I did sleep, where, in the past, I would have been unlikely to.

The next day my words didn’t return until mid-afternoon. My system finally closed down, and I did little more than lie on the sofa and sleep from time to time. But I felt calmer. The tension had gone. The storm had passed. The air had cleared.

And now I understand why this happens from time to time it feels easier to cope with. I’m not getting ill in the same way I did when I tried to fight through and keep still and so on. Although, perversely, the behaviour I exhibit probably looks more disturbing and maybe even frightening from the outside, from the inside it is very different.

In the past, an outside observer would just have seen someone who seemed like they were unwell and therefore became quiet – I’d have looked as most people expected me to look. But inside I would have been feeling utterly terrible, utterly unable to comprehend why I felt so bad, and in a total state of panic and desperation.

These days an observer would see someone who was completely unable to talk, compulsively rocking, maybe flapping their hands, bashing themselves against things, and even (though I try not to do this too much) hitting their own legs and arms with their fists. The part of me that has spent over 40 years trying to fit into a neurotypical world knows that I must look odd, and even maybe distressing, to the outside observer.

But inside, these things calm me. Inside they feel instinctive and normal and OK and can very quickly make me feel much much better, better enough to settle down to sleep. Better enough to wake the next morning and know that it doesn’t matter if I still can’t speak and I have to draw a letter T on my husband’s skin with my finger to indicate that I’d like a cup of tea.

And he no longer thinks I’m just asking for tea that way because I can’t be bothered to ask properly. And I no longer force the words to return before they are ready, and my brain therefore has time to recover.

It still feels very new, because it is still very new, allowing myself to be like this. I know from reading posts on groups and so on that many late diagnosed autistic people struggle to allow themselves to be who they really are, after decades learning to live a different way. And I’m certainly not always finding it easy – the intersections with the outside world can be particularly difficult at times, and the change from the old life is huge. But I am determined to live as my real self – 45 years was quite long enough to maintain the act that so nearly killed me on many occasions.

So that is the way it now is. And my way is to allow myself to be as fully autistic as I need to be wherever and whenever possible. And to be open about it as much as I can.

And maybe it sounds really odd, but that actually makes me really really happy, because it feels so completely right.

The new life becomes more and more real as time goes on.

Good, Bad, Random!

It’s as if my head is desperately trying to prove just how true the oscillation theory actually is. Thinking back over the last few days:

Saturday – was a fairly good day. I knew I was a bit on edge, but still managed to get out and about to visit my best friend then to meet my husband for coffee. I was tired, and very much in need of time in the dark under my weighted blanket, but I was OK.

Sunday – was a bad day. I felt distracted and ill-at-ease all day. I achieved very little aside from watching multiple episodes of Columbo, a James Bond film, and The Terminal. I spent a lot of time under my blanket on the sofa, stimming in one way or another almost constantly.

Monday – I wrote the post about the oscillations. I then went out for my first proper run in months, just a single kilometre, but such a massive achievement from where I was. I came home and updated my calendar and replied to a few e-mails and had a generally good and productive evening.

Tuesday – was a terrible day. The neighbours were doing some DIY in the next room (we live in a flat) and were banging and drilling and scraping all day. I tried earplugs, headphones, ear defenders, but the feeling of all of them touching my ears was worse than the noise. By 4 in the afternoon I was a mess, my sensory system totally overwhelmed by the noise and feeling of closeness of the neighbours, and my brain seeming to be doing somersaults inside my head. It wasn’t good.

And I reacted in one of my more maladaptive ways to feeling so terrible – having hardly eaten anything all day I decided to have an early glass of wine, which led, eventually, to, well, rather more glasses of wine, and then even more, stronger, cheaper, wine… (you get the picture). I probably made a total arse of myself on facebook, but I did survive some fairly dark thoughts, so for that we must be thankful I guess!

It was also one of those days where I couldn’t write coherently. I find those days incredibly frustrating – when my head is full of thoughts and I can’t turn them into any sort of useable form. I started 4 blog posts / poems. Only one of them makes even vague sense, and it’s not exactly fun stuff for parties. I have a small collection of the darker stuff that I’ll perhaps try to sort out when I have enough energy to do it, but I’ll have to be in the right frame of mind for that.

So, ironically, just as I posted the post about oscillating, the last few days have been a microcosm of my life over the last 9 months or so. Good – bad – good – bad, and now, we’re back to good!

Today I feel much better. My head is clearer, I’m making myself eat food and drink sensible things like water and milk and tea, and I’ve washed my hair and checked that I’m wearing trousers without holes in in anticipation of spending the early evening at a “poetry and mental health” event which my husband is organizing. Also, the neighbours are quiet today, which helps immensely.

There are still unfinished blog posts in my folder, and there are still things I’d really like to be doing from the jobs list, but at the moment I’m happy to take whatever progress I can get. On days like this, when I feel somewhat inadequate that I haven’t yet written something really helpful (this blog is such a strange mixture of articles, journal entries, personal accounts, memories, random poems and so on), I can remind myself that I’ve only been doing this for a few months and although I really want to produce helpful material and a beautifully crafted set of posts, I also started this blog as an outlet for my thoughts, since I have no therapist nor much else beyond an exceedingly tolerant husband, one or two real-life friends, and those with whom I’m connected on social media.

I’m also really still getting used to the idea that I am autistic, I’m still working out how to interact with people out in the world in a way that is both possible, so that I can do the things I want to do, but will not break me as badly as it has done in the past. This is the start of the process, a time of experimentation and working out how to live my new life as an openly autistic person. I keep expecting myself to have all the answers, but I forget that I’m still very much at the start of this whole thing and it will take time before I can be where I want to be, both as far as being any sort of autistic advocate or gaining as much knowledge about autism as I want to, and simply being able to live some sort of life that works for me and I can cope with.

And I’m trying to resume bits of my old life too – playing music, running, studying, maths and science, a bit more attention for the animals, participating in events, seeing friends, even sorting out the chaos that is our flat, and so on. But I know that I have to tame my natural instincts, which are to plunge headlong into absolutely everything the minute that I have the slightest bit of energy (though that taming really doesn’t come naturally).

And to round off this somewhat random and oscillatory blog post, I’ve just looked at the date on my clock and noticed that it is exactly five months ago today that I published The Discovery and announced publicly that I am autistic, having spent the preceding four months getting my own head round the idea and discussing it only with a very few people. It was an interesting day, and the reactions from people who knew me were interesting too.

I’ve come a very long way since then. Things that seemed really wild just a few months ago seem to be such an established part of my life now. Life really has changed a lot.

And, on balance, it’s changed for the better!

Cyber Housekeeping

Yesterday I did something that I didn’t think I’d ever do in any meaningful way. I returned to twitter.

Twitter and I have a long history (in fact, exactly as long as facebook and I do, since I joined them both on the same day). However, where facebook has provided me with a fairly steady relationship over the years, twitter has been the wild child, the passionate affair that burned brightly and eventually extinguished itself after an obsessive phase with it that saw me unable to go to bed for fear of “missing something” and some sort of falling out with a friend that I never really understood! After 44,400 tweets (or thereabouts, according to my account), we parted company around 5 years ago, and I visited only occasionally, usually to check up on major news events or occasional sporting things.

When I set up this blog I tried to set up a twitter account for it. I knew I should, but didn’t really want to return to my old account as I still wasn’t really sure at the time exactly how open I was eventually going to be about being autistic. The process had become more complicated than when I first joined twitter, and when I tried to log in from the app it wanted a phone number (which I wasn’t prepared to give it) so I just gave up and stuck to facebook.

However, things have changed since then. My friends have, from time to time, tagged my personal facebook account on the page, and, despite attempts to be vaguely circumspect about my identity (I’m not sure why – just that rather a lot of people seem to be so I figured it was the thing to do), it really wouldn’t be difficult to discover who I am. Furthermore, I’ve now reached a stage, since diagnosis, where talking about being autistic is much much easier, and this blog has taken off in a way I could never have predicted (if not in terms of readers, certainly in terms of posts)!

And I kept reading in other people’s blogs about the autistic community on twitter. About #actuallyautistic hashtags, and a whole load of stuff that seemed to suggest that twitter would be yet another source of information about autism – and finding out information about autism is, basically, one of my main reasons for living right now. As usual, the thing that has driven me, back to a social networking site I had given up, is my quest for information. As I’m sure I’ve mentioned before, when I get interested in something, I get VERY interested in it. And autism seems to have become one of my inquiring mind’s most recent victims (the other is the film Chariots of Fire, how it deviates from what really happened, 1920s sprinting in general, the 1924 Paris Olympics, and anything to do with either Harold Abrahams or Eric Liddell)!

So I’ve revamped my old account, complete with old followers and vast numbers of tweets that were probably mainly about tea and biscuits if I remember rightly! I changed the profile picture and cover photo (or whatever they’re called on twitter these days) to the ones associated with this blog and its facebook page, updated my biography to include something about being autistic, and started to engage with folk by tweet again.

So, 2000 or so random victims, who previously expressed an interest in viola playing, mathematics, running, or rats (and cats and other animals), will now likely wonder why they suddenly follow someone called Finally Knowing Me and start receiving tweets from some random autistic blogger! Although I expect discussions of cups of tea and so on will not be completely excluded – will just have to see how it goes because the whole “return to twitter” thing feels somewhat experimental at the moment.

At some point I’d like to tidy up the main pages of this blog a bit too. The Blog Guide is very out of date, the home page no longer really says what I want it to say, and the tags and categories (which I started using in a very random and experimental way because I really didn’t know what I was doing with them at the time) are all over the place. I expect there is a way to add a “twitter button” to it as well! Once I have enough energy and when I can trust myself not to stay on the computer so long that I end up unwell, I’ll try to organize things a bit better. I’m also aware that there are now so many posts here that anyone who arrives afresh might wonder what the heck is going on with it all – I know I would, but then I’m easily confused, so maybe that’s just me!

Everything is all, still, very much a “work in progress” at the moment. Eight months ago even the idea that I might possibly be autistic seemed totally wild and rather bonkers – an outlandish series of suggestions by a few friends! It was only just over six months ago that I first typed the words “I am autistic”, having done some research that indicated rather strongly that the friends were, in fact, correct. I disclosed publicly on this blog four months ago today, following the first rather disastrous attempt to get a formal diagnosis. And I was only, eventually, formally diagnosed seven weeks ago.

So it’s all very new. And I still don’t know what the final result of the whole discovery will be. I don’t know to what extent I will become “an autistic blogger” on any kind of permanent basis, or whether I’ll end up doing something else completely different. Oddly, I keep reading about people who describe discovering they are autistic as “finding their tribe”. I have rather mixed feelings about this – partly because I have actually discovered I’m not as interesting and unique as I thought I was (if you put me into a bucket full of neurotypical folk then I do, indeed, stand out as somewhat different, but if you put me into a bucket full of autistics then I’m actually rather ordinary (it’s the “autism nicked my schizzle” syndrome again))! And partly because I’ve lived without any sort of “tribe” for so long that the notion of belonging to any cohort of people, no matter what sort of people they are, seems somewhat intimidating. I have never had a “tribe” or been part of any sort of group in any meaningful way for any significant length of time. I have existed mainly on my own, as a single unit, and I was actually pretty reluctant even to get married until I discovered a husband who was also a single unit and didn’t expect much in the way of “togetherness”. If I’m going to regard myself as part of any sort of “tribe” or “group” then it’s going to require a bit of a shift of perspective – I’ve not really sought out human company in any great way in my life, and certainly the idea of “group” stuff really feels exceedingly strange.

Anyway, we’ll see how it goes, and we’ll see how twitter goes (and whether I end up with three followers and a few bots (does twitter still have bots?)), and I’ll continue to think about whether I ultimately become some sort of autistic advocate, turn any of these ramblings into some sort of book (though I sometimes get the feeling that there are now so many books that maybe I don’t have a great deal extra to add and should leave that stuff to the professional writers in any case – I’ve never ever believed that I “had a book in me”), and I’ll, obviously, continue to make random discoveries about myself and get used to my changed perspective on life and so on. And, for the time being, I’ll probably continue to subject you gentle readers to a few snapshots of the inside of my head, conveniently translated into word form for easy publication online, partly because, aside for a couple of follow up sessions with my assessor, there is no hapless therapist trying to figure out what’s going on between my ears so I have to do it myself and a blog seems as good a way to do it as any, and partly because one or two folk have told me that it is either educational, or even helpful to them!

Evolving Understanding

Now that I come to see it written down, that title seems really really strange. But I can’t think of a better one, so it’ll have to do. What I’m trying to say is really something along the lines of “I want to write about how my diagnoses (particularly with regard to mental health and neurology) and my understanding of those diagnoses and ability to discuss them has evolved over time” but that’s way too long for a blog title!

In addition to being autistic, I also have bipolar disorder (bipolar II to be precise – which means that my manic episodes are actually called hypomanic episodes and are somewhat more moderate than the full mania of bipolar I, but that my depressive episodes are generally longer and more extreme than the depressive episodes usually associated with bipolar I (there are also other forms of bipolar disorder, including cyclothymia (often called rapid-cycling) and, I believe, something about mixed states or not specified – my knowledge on current bipolar disorder designations is a bit rusty as I’ve not done much work on it recently and I don’t have the time to do a research project on it today)).

I was formally diagnosed with bipolar disorder in 2010, although I had evidently been self-diagnosed for some time before that. I briefly wrote about my experiences back in July 2009, and I was clearly already comfortable with the self-attributed label at that time, so I suspect I had been self-diagnosed for some while before then – I really can’t remember. I have openly and comfortably spoken to anyone who cares to listen about bipolar disorder, depression, and anxiety for many years now, and I’m currently learning to do the same regarding autism. As it’s bipolar day today I had wondered whether simply to share my previous writing about my experiences with bipolar disorder, but when I looked up those writings my rough style and my evident lack of knowledge were just a bit too grating, so I decided to write this post instead.

And so we come to the notion of evolving understanding. It is clear from my 2009 writing that my own understanding of my mental health and neurology has evolved massively in the last 8 years. It is also clear that the understanding of autism in general has evolved massively over the last 8 years. And it is also clear that some of the issues in my life that I attributed to bipolar disorder back in 2009 were obviously related to my being autistic, as this quote, from 2009, shows:

“Every so often I get stressed, sometimes for no apparent reason. And sometimes, as happened when the treadmill broke recently (it was really just the last straw), I go over the edge. I cry uncontrollably, I am unable to focus on anything and incapable of making even simple decisions. Work becomes impossible. I feel terribly guilty. Eating normally becomes impossible. My senses go haywire. I shake uncontrollably. My legs HURT. And the world becomes a very frightening place, full of bright lights and loud noises, where even little old ladies with sticks seem to move at the speed of light. It is worse in the mornings. And, as I am now discovering, rather hard to write down in a way that makes any sense.”

Bipolar disorder, particularly bipolar II, and particularly in those who are AFAB (Assigned Female At Birth), has traditionally been a common misdiagnosis in the days when the understanding of autism was poorer than it is today. I did wonder, when I received my autism diagnosis, whether my bipolar disorder diagnosis would be removed, because so many of the ways the two conditions present and interact can be similar. However, bipolar disorder is also a common comorbid condition with autism, and the prevalence of bipolar disorder in the autistic population is far higher than in the population as a whole. During my assessment there was a long discussion about my mental health and about how bipolar disorder and autism interacted in my life, and I’ve also mentioned this interaction in the post about Different Language. The conclusion was reached that bipolar disorder is, for me, a comorbid condition alongside autism, and the two have to be considered together.

It’s also obvious now, from the quote above, just how many of the characteristics I ascribed entirely to bipolar disorder in 2009 were actually part of my being autistic (“My senses go haywire” and the subsequent descriptions of sensory problems associated with light and sound are obviously autistic characteristics, in hindsight). For the best part of a decade, bipolar disorder was blamed for pretty much everything that was “wrong” with me, and for a decade or so before that it was simply “anxiety and depression”. As life has progressed I’ve steadily acquired more diagnoses (and more “labels”), which might be seen as bad in some ways, but is actually providing me with much greater understanding of how my head works, and I hope, eventually, how to control it sufficiently to live a life of reasonable quality.

Perhaps, when I’m a bit more able to focus than I am currently, I’ll write a bit more about bipolar disorder and how it affects me and how it fits into my life. I’ve spent most of the last decade becoming reasonably competent at managing the condition, through a combination of medication, various talking therapies, mindfulness, and, possibly most important of all, keeping a daily mood diary (which I did for years until summer 2016 when the “autism hypothesis” was formed and things went completely crazy – once I am a bit more settled I shall set up a monitoring system that takes both bipolar disorder and anxiety and autism into account). Although some of these treatments were not totally suitable for me because they exacerbated issues caused by undiagnosed autism, they did, on the whole, work for management of my bipolar disorder – what I need to do now is to adapt them so that they’re working WITH my neurology to improve my mental health, not against it.

And my understanding of mental health issues and neurology continues to evolve, as, I hope do the understandings of others. Part of the reason I write this blog is to try to understand things myself (it is well-known in teaching circles that explaining things to other people is a good way to test understanding) and also to try to help others understand the complicated world inside some of our heads!

I do, however, fear that I’ll look back on that last paragraph (and possibly most of the rest of this blog) in 8 years’ time and think that my “rough style and my evident lack of knowledge were just a bit too grating”, just as with the 2009 writing, so maybe it’s time to stop here.

Euthymic bipolar day to you all!

Talking About It

I described, in Strategy Deployment, how I had dinner in College a few nights ago. The routines and protocols of such dinners are generally well-known to me, and one of those routines is a loose convention that you tend to chat to one of your neighbours during the first course of dinner and another during the second. It’s not a hard and fast “rule”, and who you actually end up chatting to depends a bit upon circumstances, but you can reasonably expect to talk to at least two people during the course of the meal.

On one side of me I had my best friend, who knows everything about what’s been going on in my life over the last eight months. He and I chatted, initially, across the table (we were on a corner) to his other neighbour. My main memory of that conversation was that we discussed the renovation of a pianola, owned by this other person – for me a nice, easy, safe topic of conversation, music and mechanics combined. No problem!

On my other side was another person I know reasonably well, a former tutor of mine from nearly 30 years ago, who I last saw at a dinner in 2013. As the main course arrived, he turned to me and first apologised for ignoring me during the starter (he’d been catching up with his other neighbour), as appropriate, and then he asked me, predictably, what I was doing these days.

There had already been a slight mention of the fact that we’d sat right on the end of the table, in the corner, when we first sat down. My best friend had explained that “there was a reason” we’d chosen those particular seats, and the fact that I was wearing dark glasses gave another clue that things were not “entirely regular”.

So, at the moment the question about “what I was doing these days” was asked, I had a choice. I could either (a) try my hardest to come up with some sort of conversation that made some sort of sense and would be adequate for the occasion, (b) ramble on a bit about “life being interesting” and “a few sensory issues” (to explain the dark glasses), or (c) just give the whole “I just got diagnosed autistic” speech!

A couple of months ago, when I went Out to Dinner, I was pre-diagnosis, and just being out of the flat at any social occasion at all was a huge thing for me. That evening, there were a couple of people there who knew what was going on in my life (one was my best friend, and another is friends on facebook and reads some of these blog posts), but a third friend didn’t know, and, two months ago I wasn’t ready to tell him, in person, by speaking. On that occasion I opted for option (b) and then e-mailed him after the event, sending him the link to this blog to explain more fully.

A month later, just before diagnosis, I was at an orchestra rehearsal, and wanted to explain to another non-facebook friend, what was going on. I managed, just, to get the words out, but was shaking and terrified, even though I knew that she was the sort of person who would be absolutely understanding and, like everyone I’ve so far told, she reacted by saying “Yes, of COURSE, that makes so much sense.” However, being able to articulate, in words, out in the big wide world, to other people who didn’t already know, that I was autistic, was still, at that point, seriously difficult.

Those of you who have been reading this blog since its inception must be wondering how this can possibly be. I’ve now been writing about being autistic, in as much detail as I can persuade my head to produce, for months. Yet just one month ago I could hardly form the spoken words to describe what was going on and two months ago I couldn’t do it at all. Of course, what might or might not have been evident from the early posts of this blog was the absolute fear when I posted The Discovery as to how my news might be received, especially as I was taking a huge gamble by disclosing after the disaster of my first assessment, as described in Too Articulate and Too Complicated. At that point I decided to disclose anyway since I couldn’t work out how to carry on living without doing so, and I got to the point where I’d decided that the risk of losing what remaining social life I had was probably worth taking in order to stop the feelings of no longer wanting to exist. But it wasn’t easy.

However, the blog moved on, the response has actually been amazing, and I’m now typing stuff about being autistic into one of my various devices on pretty much a daily basis.

But I still hadn’t reached the point where I could TALK about it to people who didn’t already know by reading the blog – at least not without almost falling apart on the spot and wishing the ground would swallow me up there and then and never spit me out ever again.

So, now returning to the point at which my former tutor turned to me and asked me “what I was doing these days”, what did I do?

I started with a couple of sentences reminding him that there was a “reason” I was sitting on this side of the table, I mentioned the dark glasses, and then I finally got to the point where I went for option (c) on my list above.

I’m certain I talked too much, and probably didn’t obey the proper rules of back and forth conversation. I also couldn’t quite multitask and eat my dinner at the same time. And my “I’m recently diagnosed autistic and this is how it came about and so on and so on and so on…” script is still very much in its embryonic stage (part of what I’m doing when I write these blog posts is teaching myself how to talk about it, part of what I’m doing when I read other blog posts and articles and books is giving myself the vocabulary to be able to talk about it, and starting to form my own ideas and where I fit in to the autistic world and how being autistic affects my life).

But, for the first time, I told someone who didn’t already know, and managed to do it without falling to pieces and shaking so much that I nearly dropped my drink, or starting to feel my speech fragment, and was able to have some discussion about it.

Admittedly, for me, dinner in College, at a place that has now been familiar to me for the best part of 30 years, feels like a safe environment. I’m lucky to be able to return to the social world, gently, in such a place, following familiar routines, and knowing that the people around me are likely to be sympathetic, and, on the whole, interested. So it was a good place to start.

However, I think the other thing that really helped was the confidence I have gained since I was formally diagnosed. I don’t think I could have had that conversation at this stage without that extra confidence.

But, whatever the circumstances, and whatever the reasons, it was the first time that I had been able to sensibly discuss being autistic with someone who didn’t already know. It was the beginning of being able to talk about it to other people – actual talking, not typing on a blog post, which is very different. I have known since the “autism hypothesis” formed, right back in August 2016, that if the hypothesis turned out to be true then I would need to find ways of talking about it, and I would need to construct scripts and work out how to explain to people (maybe, even in the fullness of time, be able to educate and inform and advocate, who knows). I’m not fully there yet, but I’m a huge step nearer than I was this time last week!