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!

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!