Also Being Autistic

Bizarrely, the point made in the last post, that I find it hard to imagine how life could be good again when it’s bad and hard to imagine how it could be bad again when it’s good, was proven when I finally clicked publish on that post and immediately felt a weird sense of dishonesty.

I wrote the post a few nights ago, in one of the good phases, put it onto the blog site in draft, and numbered it to be posted next. But by the time publishing time came, I was struggling again, and it felt a little weird to post something so unrepresentative of my current state.

I also suddenly worried that I’d equated lack of social imagination with lack of empathy. If I did, then I didn’t mean to – I’m still trying to figure all this out and this blog is a learning and analysing experience for me as well as something for others to read if they wish to. I still need to find proper words to describe all these things better. I still need to organise and structure my thoughts better, and I’d like very much to be able to explain all these terms properly.

This constant back and forth, constant switching between feeling wonderfully neurodivergent and fabulous and relieved to have discovered who I really am, and feeling frustrated at how limited my life is and how difficult I find things, is still characterising my life quite strongly at the moment. I described some of the effects this has on me in Oscillating, and it continues to be true. I suspect it might continue to be true for some time to come.

The warm fuzzy feelings in Being Autistic are real. I AM happy to have discovered my neurology and to have solved so many mysteries from my life. I have no issues with people thinking I’m strange, or with stimming in public, or with stigma from anyone immediately around me (I realise this makes me massively privileged – when my friends see me flapping my hands or rocking back and forth they don’t tell me to stop, they just check with me that it isn’t an indication that I’m in any sort of distress). In many ways it’s all good. Lovely stuff – stick on the dark glasses and ear defenders, take my phone everywhere in case my speech fails, carry on with life. Proud autistic stuff, rainbow infinity symbols, stim toys, clothes without labels, and not a worry about what society thinks. Even before I was a nonbinary autistic I was an AFAB who hadn’t worn make-up or a bra for over 20 years and was happy existing in socks and sandals without caring what others thought. I’ve been miles away from many societal “norms” for decades, and I have enough confidence not to worry about that most of the time. If people like me and want to be friends with me on my terms, great, if they don’t, then no big deal. Now I have a reason to explain just why I fail to comprehend society’s codes I feel even more justified in being myself and not worrying about it. I am fully “out” as autistic to anyone who cares to know (and probably people who don’t too) and absolutely happy with that (to be honest, anyone who knows anything about autism can figure it out in about a minute anyway if they meet me – I do present as stereotypically autistic in many ways and even if I try really hard to mask, at the moment I’ll last only about an hour before I start to collapse or get sick). Additionally, I can take the pressure off myself to be “strong” so in many ways it’s even better than before – I can ditch the self-blame, I can relax, I can just enjoy being me.

However, there is a flip side. I am still coming to terms with the fact that I am not the Strong Woman of my mask. My day to day existence is, for the most part, relatively low quality. Most days I spend between 14 and 24 hours on my own in a grubby, overcrowded, dark flat, trying to recover from the days and times when I CAN get out and do things. I look at my former colleagues from college days, many of whom have houses, children, and jobs, and I have none of those things. Certainly my inability to sustain employment is down to me being autistic (and, maybe even more so to remaining undiagnosed for 45 years – I never asked for adaptions at work because I didn’t know I needed them and I lost every career and job I ever had), and my consequent large debts and relatively poor living conditions are a result of that. I read memes that tell me if I want something I have to work for it. I have done nothing less than work as hard as I possibly can all my life and the things I wanted didn’t come – those memes sound like cruel lies to me. I spent a pleasant evening socialising and drinking with friends a couple of weeks ago – the resulting overload caused an entire night of meltdowns and panic attacks and suicidal thoughts. Everyone else went to bed and woke up with a slight hangover. Every so often I ask “Why me?” and then I feel guilty because I am betraying the neurodivergence movement and I become frightened of those autistics who tell me that autism is not a disability, just a difference, but I am so very disabled by it so very often – no work, no money, some days I am a 46-year-old who cannot even get myself a hot drink or work out how to get enough food to sustain me or even manage to get dressed properly. And not all of this is “society’s fault”, it is just the way that life is and is often a result of simple practicalities. I am actually surrounded by non-autistic people who are doing their absolute damndest to understand me and to help me and to compensate at every turn for my disabilities – they are brilliant and loving and patient and I am very very lucky with them, but I am still struggling. And at those times I wish I was “normal” (yes, yes, yes, I know the old cliché that there “is no normal” etc etc, which, to be honest, to those of us who are so far up one end of the bell curve that we cannot even see the middle of it, sounds a bit trite), at those times I wish I could go to work for a week (even part-time) and go down the pub for a few hours on Friday night and enjoy a weekend with the family, which I can’t. I wish my gender was one that was recognised and understood by everyone (that is society’s fault), but it isn’t. That is the sort of “normal” I wish for…

I could go on. There is still much to explore. There are two sides to this, the dark side, where I just want all this to go away and to live a regular life (and, yes, I use the word “regular” advisedly, as I do the word “normal”), and the wonderful quirky side where I can finally be me and enjoy it and live a life that is right for me. Practicalities constantly intrude on me “being myself” because I have to eat and drink to stay well, I have to find enough money to survive, and unless I never go anywhere or do anything ever again I have to interact with other human beings in a way that often makes me very uncomfortable. To an extent, there is a part of me that needs some interaction too – less than most people I suspect, but not none at all.

I suspect these thoughts will continue for some time. I am still new to all this, only just over a year since I discovered I was autistic. As far as being knowingly autistic is concerned I’m only just learning to walk, at age 46, after over 4 decades of trying to be something else and failing at it. I’m also still very burnt out and still trying to find help, still waiting for referrals to services, still trying to discover if there is any medication of any description that might help (I can’t take many of the things that might help because of co-occurring conditions). Perhaps things will improve as time goes on – it’s still really really early days for all this stuff.

It’s also a big switch, a total change in life parameters, and I suspect I’m still fucking things up quite a lot. Still not explaining myself right – remember, I’m also very alexithymic, which doesn’t help. I’m still working it all out. It’s all still evolving, much like this entire post evolved out of a simple feeling that I should add a short explanation about the previous blog post.

Strange times.

NOTE: Since I wrote the words above, I feel different again. At the time I intended to post Being Autistic, I was in such poor shape that I couldn’t even turn the computer on to press publish and I had to do it the next day. I’m actually in better shape again now, happier, more relaxed. That’s how quickly things keep shifting, how fast the oscillations sometimes are. But I won’t write yet another post about that at the moment because this cycle could go on for a very long time!

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Typing The Words

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

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

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

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

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

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

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

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

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

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

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

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

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

I am autistic.

Variability

Today has been an OK day.
Not amazing,
Nothing much achieved,
Just clothes
And a bit of lunch,
But fine, OK
Perfectly contented
Just to be.

Yesterday was miserable.
I didn’t want
To exist
At all.
Really depressed,
Really low.
Not seeing any value
To my life
Nor any point
In staying alive.
Desolate.
Hopeless.

The day before was nice
I visited my best friend
Had coffee with my husband
Bit of shopping
Good stuff
Nice dinner.
Contented
Fine.

The day before was impressive
Coffee and breakfast
First thing
Cheese and mushroom toastie.
Two lots of shopping
Trousers, washing powder,
Bath foam, food.
All good stuff.
And then a 12K run.
Successful, good day.
If all days were like that
Life would be worth it
Totally.

The day before that
Tried to make tea
Couldn’t.
Drove to town, parked.
After three different coffee shops,
All too busy, frightening,
No words, even to ask for
A latte, which is what I always have.
No hope of buying food.
Returning home
In tears.
Fighting the urge
To damage myself.
Not able to eat.
Seeing no hope.
I’m a jobless, childless, useless
Person in their 40s
Who cannot even
Get a hot drink for myself.

This is the variability of my life.
This is the difference in capability
From day to day.

And I never know
How the new day will be.

And I struggle desperately
To imagine how life
Could be any different
From how it is
In that moment.

When it is good
I make plans
Based on the good persisting
And I imagine
Things will improve
Consistently
And I can achieve
So much.

When it is bad
I see no way
It is worth staying alive
And I have to fight the urge
To give up.
Sometimes
Taking it
One hour, minute, second,
At a time.

This is the variability
Of my life.

(And is also why
This blog
Is so unpredictable.)

Still Here

It’s OK
I keep telling myself.
People take holidays from things
All the time.
Maybe I haven’t failed
At this blog…

…I’ve just had a break.

There is so much still to say
And I need to respond,
STILL,
To messages and comments and so on.

But this last week or so
I have been a bit broken.
The price I pay
For doing things
That sap my energy
And require me
To be out in the world.

And there have been other stressors
Recently
I tried to list them yesterday
But couldn’t.
However,
I might manage today:

Washing machines
Our living situation
Bills and so on
More forms (triggering)
Childhood, children
Gender identity
Invalidation
Suicide awareness
And ideation
Further anniversaries
My biggest breakdown
(16 years ago today)
Starting to examine my childhood
(1 year ago today).

I have been low
And
I have been expecting too much.
Pushing too hard.

Accepting the limitations
On my life
Is not easy.

But I risk my recovery from burnout
If I don’t take things gently.
I have to keep reminding myself
That I am disabled
And that’s OK.

And it’s OK to take things gently.
And nobody will tell me off
If I don’t blog for nearly a fortnight.

I am still here
I still have many posts to write
But life has been a bit of a struggle recently
So I’ve been a bit absent.

But I’m still here.

How To Be

I’m aware that this blog is becoming a bit erratic. There is still the story of my diagnosis to complete. There are hanging bits of part stories about discovering I was autistic. There are still random bits of semi-poems intermingling with journal entries. And I have yet to write about significant topics in a way that I eventually hope will be properly useful to others. It’s all a bit of a mess really. And I still have comments to respond to, and so many times where I’ve stated that I need to write a whole blog post about something and haven’t yet. But I can only do what I can do. My spoons are often somewhat limited and I work pretty much to capacity at all times, so I can’t do more.

And that’s just on the actual blog. Inside my head it’s even worse. There are fragments of posts, ideas, notions, concepts and so on. I have note after note after note on my phone, half-typed half thoughts about various things. It feels like I need a year or more to go through them all and construct coherent writings from them. There is so much to do, I’m so behind with things that I need to do to keep my life just about ticking over. And there never seems to be enough time, and by time I mean the sort of time where I’m functional enough to achieve things.

Maybe, however, this erratic situation, this state of chaos, is actually reflective of my own state of mind and my own current situation, which is also erratic and chaotic. Over a period of 24 hours last week I went from hating being me and not wanting to exist, to being content and still feeling this huge relief of realising who I am. I am still struggling to speak or get out of bed some days, but can be quite capable on others. And I have also realised over the last couple of weeks, that when I am out of the flat, in public, with other people, I have a situation that is still not resolved, and not even close to being resolved.

I do not know How To Be.

The problem is this:

I have always been regarded as somewhat “eccentric”, and even, maybe, some would say, a bit weird. That’s OK, I’m cool with that, it’s not a problem to me, I’ve dealt with it long since. After over 4 decades of being a bit on the interesting side of things I’m pretty used to it. I got really upset about being bullied and so on at school until I was around 15, but by then I’d largely learnt that it was just part of life and although it wasn’t much fun, I’d learnt to act “normal enough” to survive out in the world. I’d learnt to live with it, to cope.

The problem, of course, was that in learning to act “normal enough” and in learning to cope, what I’d actually done was literally learnt to act. I’d built a mask, and a pretty effective one at that. And the mask that I built was one of a rather strong and confident person. I wasn’t the stereotypical autistic girl “flying under the radar” by sitting quietly in the corner in the class, unnoticed. I wasn’t failing exams or dropping out of school. I was strong-willed, brash, and externally confident (even internally confident to an extent, because however much of a failure I was at friendship and sport and so on, I could learn things and pass exams reasonably easily, so that was what I did). I was told that I was capable and could achieve great things (largely because of the exam results and my capacity for learning things), and so the mask that I built was one of a high-achieving confident young woman.

However, this mask came at a price, and that price was my mental health. Constantly “being strong” and “achieving” in the way that I did in my early 20s was breaking me inside, and by the time I got to my late 20s I was very very ill indeed, heading for the serious episode of burnout at around age 30, from which I never really recovered, and my life was falling apart.

Up until last year I continued with the masking process to a considerable extent while out in the world. I continued to believe that the strong me was the real me, and once I’d recovered from being mentally ill (I really believed I’d get better at some stage) I’d be back to full strength. However, that continual masking was breaking me yet again, and, perhaps inevitably, I fell apart again completely, in the summer of 2016. And by that time the world had caught up sufficiently for the events to occur that eventually led to me being diagnosed autistic.

And, because of the sort of person I am, having discovered I’m autistic I’m determined to BE autistic. I don’t consider it something to hide away, I don’t consider it something to try not to be. It’s a huge part of my identity, and after over 4 decades being “somebody else”, the relief at being a more authentic version of me is huge. I suddenly realise it’s OK to allow myself to eat the same thing day after day after day if it makes me feel better, I’m allowed to stop forcing myself to take part in group conversations until I’m so sick I’m at the point of collapse, I can stim and fiddle with things and know it’s not me being wilfully annoying but is just part of my neurology, and I’m finally learning how to be myself after decades of trying to be the person society expected me to be and failing at it.

Which is all very well when I’m at home, or with tolerant friends or someone who can care for me and explain. And is absolutely fine when I’m in safe environments and have enough spoons to take care of myself. All very lovely – in theory all I need to do now is to be my fabulous autistic neurodivergent hand-flappy rocking-back-and-forth sunglasses-wearing eye-contact-no-longer tell-it-like-it-is self! Neurology explains everything, no more need for acting! Yippeeeee!

However, I’m a grown up person. I have to live in the world. I have to go out to shops to buy food. I have to be able to deal with other human beings if I want a life beyond the television and the sofa. I want to participate in activities that will be full of neurotypical folk who think it’s great to have a spontaneous chat about nothing at all and that such a thing takes no effort, who sit and stand too close to me for comfort, who are irritated by my stimming, who will expect me to use polite social niceties that mean something to them, who don’t even know what being autistic means, and who mistake my lack of social finesse, my sometimes inability to speak, my lack of eye contact, and so on, for rudeness or disrespect or similar, which, of course, it isn’t, it’s just that my natural way of being is different from theirs.

And so I come up with a dilemma. As I’m starting to emerge from burnout and beginning to go out into the world again a bit more, I’m finding that there are times I slip back into the old mask, which is probably inevitable after 4 decades of living that way and it becoming such a practised part of my act. It’s very obvious when I do though, because I start to feel very ill and bad rather quickly and I don’t have the stamina to maintain it for very long. There are also times when I catch myself doing something really obviously autistic (like losing speech or flapping my hands or something) and realise that if something went wrong or somebody challenged me, I’d be in deep trouble without being able to explain properly what was going on and with no carer on hand to help. And how DO you deal with a stranger who is standing so close to you that their “person vibes” are making you feel ill, when they don’t even understand the concept of “person vibes” (which, incidentally, is a term I just invented now)? They think you’re being awkward, but you’re not, it’s just that you can’t cope with that much person that close in that time and place.

I have no answers at this stage. But I’m coming up against the same problem that I read about from the parents of autistic children, but for myself, not a child. I’ve seen discussions about the extent to which autistic children should be pushed and made resilient and able to cope in life, and the extent to which they should be encouraged to be their fully autistic selves with all that that entails. I’m now considering to what extent I need to continue to use the mask I’ve developed in order to survive in the world and to what extent I can allow all my autistic traits and tendencies to dominate. On the one hand, trying to make autistic people “look” neurotypical can be massively damaging to mental health (don’t I know this from bitter experience), and how well we “fit in” or “look normal” is no measure of success in an autistic life because it denies who we are and can cause huge burnouts, but on the other hand we have to survive in the world somehow and that needs a certain amount of resilience and coping ability, especially given how little support there is in most societies for autistic people, particularly those of us who are adults. Add on to that the complications of late diagnosis and the concomitant identity crisis that arises from this huge change in life, and it’s easy to see how difficult it is to know how to proceed from here.

And this is not just about societal attitudes, but about practical survival and physical health. I’m not at the stage where if the supermarket discontinues my usual food that I don’t eat at all, but I did sit and cry for half an hour the other morning and declared that I wouldn’t eat or drink that day because we’d run out of the milkshake that I usually have when I first get up. My autistic brain said NO in big shouty letters, and I had to use my rational “learning” brain to argue with it. I had to allow myself to recover from what was basically a mini-meltdown over a milkshake, and then gently persuade myself that I was going to eat and drink and it would be OK to drink something different until my husband could get to the right shop to get the right sort of milkshake. This all takes energy (and, in my case, a very understanding husband), and it’s nobody’s fault – it’s just the way my brain works being at odds with what I know to be good for my body and overall health!

And going out into the world and coping with everything that the external world throws at me takes even more energy, even when people are trying their utmost to understand and be helpful. I’m quite good at it because I’ve been practising for a long time and I’ve learnt a lot of social skills which I can maintain quite well for the duration of most social events as long as I get enough downtime in between, but I’m also determined to be as autistic as I need to be where possible, because it’s so much easier, more relaxing, and SO much better for my mental health.

Also, while knowing I’m autistic is an amazing liberating relief, and while I really like being autistic me because it’s so natural and right and comfortable, I also rather liked the strong capable mask person (which is possibly understandable – since I created a persona it probably made sense to create one of someone I liked rather than someone I hated). I don’t want to lose some of those strong bits (being “tough” is something I enjoy in many contexts), and I still need some of that resilience to survive and to live any sort of sensible life.

However, I know that, aside from the briefest of interactions, I have to be open about being autistic. I read of people who hold down jobs and don’t tell their employers that they’re autistic – that wouldn’t be possible for me as I’m too obviously different, and at my best I can maintain that level of mask for only about 3 days absolute maximum, even when I’m going home in the evenings. In the past the jobs have just failed, and I’ve lost them. Without significant and noticeable adaptions there are things I simply can’t do. At the moment I’m not even close to being able to work, but if that ever changes then there’s no way I could hide such a big part of me. I can currently act neurotypical for an hour or so at most these days, certainly not long enough to hold down a job!

So I’m now stuck in a bit of an inbetween state, trying to work out where to go from here, trying to work out how I can take this new discovery, be myself, be openly autistic, enjoy the benefits that brings to me, even manage to advocate for other autistic people and educate others about autism, but still manage to live a life that doesn’t mean I’m sidelined for things, or unable to participate in many of the sort of events that make life interesting and worth living.

This post has turned out to be more a list of questions, of musings, of ponderings, than anything else. Maybe, a year on from discovery, six months on from diagnosis, and slowly emerging from burnout, this is a phase I have to go through. I have to ask the questions before the answers will start to emerge. I have to consider how I’m going to live my life, what I’m going to push myself to do, how much I can ask for adaptions to do things I’d be unable to do without them, how much I’m going to give up on some things because it’s too much, and where the balance will eventually lie. Maybe there will never be a full balance, but some sort of compromise between the bit of me that craves adventure and activity and the bit of me that needs solitude and peace.

And after two thousand words of analysis and consideration…

I still don’t know How To Be!

I am still having, consciously, to make decisions about whether to present the old mask to people, which is practised and known and I can do only for short lengths of time, or whether simply to “be myself”, which is new and unfamiliar to me and others and requires explanation and education but is so much more relaxing and feels so much more honest and authentic.

I suspect I’m still learning, trying things out, sometimes getting it wrong, sometimes getting it right, discovering what works and what doesn’t. I suspect that learning How To Be as an authentically autistic person who can actually manage to do things out in the world without getting constantly broken will be an iterative process, and I’m still very much at the start of that process.

Hypothesis Formation

Yesterday, the following status appeared in my facebook memories from one year ago:

Did all that just happen? Now to try and remember what I was doing 3 weeks ago. And to consider what to do with the new information concerning how my head reacts to stuff.

At that point I didn’t mention on my facebook wall that it had been suggested by several people that I might be autistic. I just vaguely alluded to “new information” about “my head”. As far as I was concerned, the notion of me being autistic seemed extremely strange, extremely unnerving, and, as far as I knew at that point, extremely “not me”!!!

Oh, how I laugh at that last bit now!!!!!

I certainly wasn’t going to start chattering on about it on facebook at that time, and, as far as I can remember, I was still really regarding the whole “me being autistic” thing as one of those slightly wild ideas that folk have and that would eventually fall by the wayside as being just another one of those theories. I didn’t want to post something up on my wall, be shouted down by a whole bunch of people, and then unfriended by a whole bunch more. I wasn’t confident enough of anything at that time to mention the idea to more than my husband and one or two friends.

However, the fact that several people had, independently, suggested that I might be autistic was enough to make me take the idea seriously enough to do some research and see if I might find out what was at the root of their suggestions.

I did what anyone brought up with a toe in the world of science would do. I formed a hypothesis, which I called the “autism hypothesis” (i.e. proving the hypothesis would mean that I had gathered enough evidence to confirm that I was autistic, and disproving would mean that there was insufficient evidence and I wasn’t autistic and I could ditch the whole idea and just go and have a drink and forget about it).

So then I had to investigate the hypothesis. Gather evidence. Find out what this whole “autism thing” was actually about!

A friend of mine had sent a copy of Liane Holliday Willey’s Pretending to be Normal to me and I’d read it with a certain amount of bemusement – apparently it was something to do with autism, but it just seemed like a fairly ordinary account of someone’s life as far as I could tell. It was enough to convince me to investigate further, but I needed more INFORMATION! Actual information, not a life story.

And so I did the modern day equivalent of what my father told me to do when I was young. Back in my childhood if anybody wanted to know anything the answer was always to “get a book from the library” and to find out that way.

I have not been into a lending library for many many years (I think the last time I went into one was for a job interview and I was unsuccessful). And I don’t believe a lending library would have been much help to me.

So I tried Google, which was also no help because it presented me with page after page of search results about small children and parenting and so on. The world of adult autistic blogs was still inaccessible to me as I didn’t know what I was looking for, or that it existed, or how to find it. And it certainly wouldn’t have occurred to me at that stage that there were groups for autistic people on facebook or hashtags on twitter or anything of that sort.

So I went back to what I knew, which was books, and typed “adult autistic” into the Amazon search bar. And discovered a book with a promising title: Cynthia Kim’s I Think I Might Be Autistic (or as it subsequently became known in our household “The book with the pencils in the wrong order”).

And on the 23rd August 2016 I downloaded the sample from the start of the book onto the Kindle app on my iPad and had a look at it.

It pleased me from the start. It provided what I wanted – information, an outline of the diagnostic criteria for autism, and the start of a list of questions that was evidently continued beyond the free sample that I had. This book was speaking my language – it had facts and lists and promised to provide me with exactly what I’d been looking for to start to work on proving or disproving the newly-formed hypothesis.

My Amazon records show that I ordered the paperback copy the same day. And that was the day on which Time Stood Still for me. The 2016 calendar STILL shows 23rd August as the date, and maybe it always will. In Time Stood Still I referred to some sort of mental breakdown, which I now know to be a huge episode of autistic burnout.kn

It was to be months before I started to emerge from that burnout (and I still haven’t, fully) and from that moment almost my entire life was taken up with investigating the newly-formed hypothesis and, later, with trying to obtain a formal diagnosis.

I read the criteria from the sample of the book on my iPad over and over again, and waited for the paperback to arrive in our mailbox so I could try to work out what the diagnostic criteria actually meant, and whether any of them had any relevance to me.

With all that’s happened in the last 12 months, and with the knowledge I now have, it seems utterly extraordinary that it was only a year ago that I started seriously to investigate the possibility that I might be autistic.

And I certainly wasn’t telling anyone who didn’t need to know about it at that stage!

If anyone had told me I’d be blogging about it publicly within 4 months I’d have thought they’d gone mad!

Leaky Head

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Must be odd for them!

I wonder what it’s like.

But I’ll never know.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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