Storm Clouds

It feels as though storm clouds are gathering in my head these last few days. I’m not sure why, and I can’t work out if there’s anything I can do about it, but I have that feeling that I’m building the sort of tension that will eventually lead to meltdown or shutdown. But not yet. Somehow the energy is yet to be released. Things are too controlled. Maybe, knowing I have a weekend of things to do out in the world means that I’m keeping control somehow. I have that feeling of wanting to cry, but not being able to.

It’s an unsettling feeling, though not totally bad. I don’t even think the overload in my head and the build up of emotions (many of which I’m struggling to identify for alexythmic reasons) is entirely negative. It’s just that I can feel a gradual build up. Of something. I’m trying to analyse what that something is. I’m trying to judge whether some sort of big stimming session would help. I don’t know. It’s a very edgy feeling.

This is the fifth attempt I’ve had at writing about it. What has emerged as a common theme in the first four attempts is that this state is a mixture of two lots of emotion. One lot could probably be called negative, and the other, positive. They are existing inside my head simultaneously, and both pouring these strong, but not totally identifiable, feelings into my system. I get emotions like this. I always have, except when too depressed, or taking large quantities of medication, which seems to blank many of my feelings out anyway. One reason I hesitate to take medication is that much of it takes away things that I value – my appreciation of music, my excitement in the world, and so on.

And so, these huge waves of emotion keep washing over me, and I’m trying to untangle them in order to deal with them. Maybe a therapist would help with this, but I don’t have one, so I’m trying to do it on my own. Although it’s becoming obvious from trying to write it down as best I can that the same things are recurring over and over and my mind is still trying to deal with them. I’ve almost certainly written about them here before, and I apologise for what is probably terrible repetition (my husband says that he is used to me saying everything 98 times) but it seems that this need for repetition, for reassurance, for rehearsing the same argument over and over is probably one of my autistic traits too – something I need to do to get things clear in my mind.

And so the negative thoughts:

The constant nagging knowledge that my life will be limited because I simply don’t have the productive energy that most people do because I’m using so much of my energy to cope with my environment and to process language. I don’t like being limited, but decades of experience have shown me that the consequences of not consciously limiting my life and of trying to “be like everybody else” are poor mental health and catastrophic burnout. I am furious about this. I do not want to have to limit my life, but I must, and I know I must. I have to learn to be gentler, and allow recovery time.

I’m still not fully able to explain to people what being autistic really means. I’m still encountering “yes, but we all get tired…” types of comments, and I’m not yet able to articulate in words that what I mean is something different and that I’m not on about it being the end of a long week and I just fancy a bit of a lie-in. I need to write a blog post about this, I know I do. It is nibbling at my insides (yes, it feels like that) and I need to deal with it. Ditto the current controversies about stim-toys and spinners. I have so many and various thoughts about the whole thing, but I can’t make them into words currently, and that is frustrating me.

And talk of schools and classrooms and so on keeps pulling me back to my own childhood, the door onto which I had closed, I thought for good, until last year, when it had to be forced open. And once it was open, it was really useful for getting my diagnosis, but it hasn’t brought back floods of joyful memories, but of a time when my main objectives were to stave off bullying, to learn to behave, and to achieve good results academically. I had no chew toys or spinners – so I chewed my tie and my jumper and I played with bits from my pencil case and got into trouble for doodling during lessons (among other things).

The late diagnosis thing still irks me. The fact that I had to get THIS broken before anybody noticed that I was autistic. The fact that I was born at a time in history when the world didn’t know about people like me. I’m still sad and angry and regretful at so much of the first 45 years of my life. I’m still furious with the mental health specialists who didn’t know. Today we talk about acceptance being preferable to awareness – even the most basic awareness 20 years ago of autism in those of us who were AFAB might have saved me so much heartbreak.

And here I am, a 45-year-old burnt out non-binary autistic, going through the menopause, learning who I am, trying to rebuild my life, and doing it, currently, without help from anyone except a husband and friends. And I often feel like I am breaking, like I just want to vanish off the face of the Earth, because my youth has gone, and I want to cry for all these things, because they’re still bothering me.

But the positive thoughts are also strong:

The relief at no longer feeling the pressure to be a high flyer. The knowledge that I have a disability (and yes, for me, it is disabling – there is much to be investigated regarding models of disability, but that is not for now) and therefore I can stop beating myself up when I don’t achieve what I thought I should be able to is reassuring. The knowledge that the levels of self-care that I need are now “permitted” is such a huge relief, so liberating, and even joyful. I don’t have to be some kind of superhero any more – I can built this new life and stop pretending to be someone I’m not.

Most people I know are being massively supportive. I’m hugely lucky to have most of them in my life. Far from being deserted by old friends, I’m still, even, making new ones, people who care enough to be interested, people who read this blog and who are helped, people who understand the difficulties, and some who do not but are investing their time and energy and are willing to learn and be caring and understanding. This makes what I could call “big feels” – I don’t have a better expression than that currently. Like so often these days, I just hope people know what I mean.

And though I cannot change the past or do anything about my childhood or its difficulties, I’m now massively enjoying allowing myself to explore the world that has now opened up of toys and things to fiddle with and things that I can buy for myself without anybody to tell me not to. I can sit and stare at my glow in the dark spinner until it runs out of glow, I can roll the ball around on my fidget cube for hours at a time, I can have all the toys now that I never had as a child, and because I am old and spend the majority of my time at home alone nobody will tell me off for doing these things. I am making up for lost time in a big way, finally releasing all the bits of me that have been hidden all these years.

And the fact that the diagnosis has come at all, even this late, is still enough on its own to make me cry with happiness. The relief, the liberation, the knowledge of who I am and why I am and how I am. The permission to be something other, the explanation of why I’ve felt as I have all my life, and the solving of hundreds and thousands of mysteries from the last 45 years. The letting go of the old expectations, the shift to a neurological identity and a gender identity that feels properly comfortable to me, rather than one I was taught was the case. The hope that I will eventually recover from this burnout and will eventually get through this phase and that life will be better than it ever has been, and that I’ll eventually build a life that will be right for me.

And part of what is causing these emotions feels like some sort of huge “sigh of relief” from my entire being. I read about labels and words and why do I need the descriptor “autistic” if I know who I am. For me, I needed that descriptor to SHOW me who I am. Learning about what it means to be autistic is teaching me how to be who I am – because after 4 decades of acting roles, my real self has become somewhat obscured and needs a little help to emerge. I’ve had a lot of training to be someone else. I have a lot to discover. The minute I knew, and I allowed myself, and I learnt for the first time in my life to follow my instincts, things felt very very different.

And each time I’ve tried to write about this, these simultaneous bunches of feelings keep emerging, over and over again. Not even oscillating, like the states described in my earlier post, but together. Sadness and anger and regret alongside relief and liberation and happiness.

And the word at the end of every piece is still “autistic”, as if I’m still trying to make my head accept it fully, embrace it fully, and be able to go out into the world and live it fully. I want to do that, so very much. I know that it will not always be easy – but I do not shy away from difficulty and I never have.

Even writing it all down like this has actually changed how I feel, released some of the energy that I had when I started typing around half an hour ago. I’m calmer. The storm clouds have rolled on past for now. They will be back. The next meltdown and next shutdown will happen at some point, but typing everything up like this has had a healing effect for now, sorted things out a little. If anyone’s still reading, then thank you for indulging me. It has helped.

An Event

I sit at the back, in the corner,
Quietly rolling the ball on my fidget cube
While my leg moves, involuntarily,
Hardly noticed by me.
Maybe I rock?
I can’t remember.
Since I stopped actively preventing what feels so natural
I am not always conscious of it,
Just like I do not always observe my breathing.

The parquet floor reminds me of years
Spent in public buildings.
I adore this pattern and its pleasing geometry.
It calms me.

They read poems, the poets, proper poets.
The theme of the evening – mental health.
Bipolar disorder all over the place.
I almost wonder if anyone in the room has not experienced
That wild fluctuations in mood and behaviour
That so many of us do.

My own system is on high alert.
It has been for hours.
I nearly didn’t make it.
Mid afternoon I felt so anxious, so unable to cope,
That I thought my entire being would shatter into a million pieces from the strain…
Like the glass panel in our sitting room did, ending up like crazy paving.
But 15 minutes beating my head against a cushion
Helped.

I sit, my legs now folded up beneath me, playing with my hair.
Machinery from the coffee shop behind me a persistent aural backdrop.
Traffic noise, horns, bicycle bells, the sound of footsteps in the street below.
British history books in my line of vision.

And words. Surrounded by words
(Not just the ones in the books,
But the loud ones, in the air).
I know I have to listen and make pictures from these words
Because there are no subtitles at a live poetry reading.
Maybe I should have acquired books of the poems at the start.
Never thought of that.

They speak well.
This is all good stuff. Mental health awareness.
Yes yes yes. It is. This is right.
So much of my own experience described.
These people know. They talk sense.
And it’s like they have been inside my crumbling head…
They have taken the same medications, felt those same effects.
I relate to what is said, even though I cannot say.
I would contribute, but my words are drying up.
There is open mic
(But no actual mic – so open air?
But we are indoors. Oh confusion!).
I stay silent. I am not a poet.
I leave the poeting to the poets
And the writing to the writers.
I am a foreigner in this world.

Afterwards, people chat.
I feel it, the heat, the familiar nearly nausea, as the sound of talking starts to overload my system.
The beads of sweat start to trickle down my back, just like they do every time I go shopping.
I retreat round the corner
And focus on the Russian history books.
Ivan the Terrible, Catherine the Great, Peter the Great.
Romanovs, Rasputin.
Trotsky, Lenin, Stalin.
Gorbachev, Putin, Litvinenko.
I am bizarrely fascinated by Russia
So this is a good place to be.
I covet a thick volume on Rasputin.

My husband finds where I am hidden.
I hug the poets, friends of mine, known online for years, some only just met in person.
All I can tell them is “Yes, all the things, yes…”
Or something like that.
I hope they understood what I meant.

As we get into the car I speculate that folk didn’t seem to mind me being there.
He makes some comment about me being the person in the dark glasses.
I had totally forgotten I was even wearing them.
I’m so used to that part now!

By the time we get home making words is difficult.
Exhaustion engulfs me.

But I did it.
Gradually working out
How to be in the world again.

But in this new life I am going out there as myself,
No longer pretending to be someone else. The act is gone.
It is all new.

Takes time
To adjust.

Whatever You Call It

So, the dreaded “Autism whatever-you-call-it Day” has arrived. The day that, in theory, should be about autistic people and their needs and so on, but, from what I’ve gathered so far, seems not quite to work out that way (remember, I’m still really new to all this, and still learning, so I’m not going to go into detail about some of the more frightening aspects of the “light it up blue” campaign (please don’t light things up blue – many autistic people hate it, as they also hate the “puzzle piece” symbol), because I need to do further research and thinking before I’m confident enough to discuss some of the things I’ve been reading over the last few months – as far as the “politics” of autism are concerned, I’m very much still at the “listen and learn” stage).

However, as a newly-fledged autistic blogger, I eventually succumbed to the need to make some sort of statement about this day/week/month or whatever. I believe it was originally called Autism Awareness (and was then taken over by a particular organisation), but that the autistic community are now pushing it towards Autism Acceptance, and I’ve even seen several suggestions that it should be called Autism Appreciation! So, I’m going to look at awareness, acceptance, and appreciation, and consider just a few of the things I’d like to see more (or maybe less) of, as far as autism is concerned. This isn’t an exhaustive list, nor am I claiming to act on anyone else’s behalf, and where I’ve mentioned “most autistic people” I am acting, at this stage, only on the impressions I’ve received in the short time I’ve been part of the autistic community. I’m also conscious that the style is a bit rough, and it makes some generalisations for which I don’t currently have “hard” evidence, and that it also addresses non-autistic people rather heavily (if there is any element of “patronising” then it really isn’t intended, though I’m worried it might come over that way). Trying to make the thoughts into words is sometimes a little tricky – I am still very much a novice at this.

Awareness

1. I’d like everyone to be aware, really properly aware, that most autistic people are ADULTS. Autism is a lifelong condition and it doesn’t magically stop when someone reaches a significant birthday. Yet the mainstream focus on autism seems to be almost universally geared towards children – many autistic adults are unsupported, have poor access to diagnostic facilities, and are finding life tough. Many of us went through years of struggles before we even knew we were autistic and are burnt out and traumatised by the experience, yet when we search for information we are faced with a barrage of articles about children. This is not to downplay the importance of care for autistic children and the fantastic job that many parents do in trying to understand and care for their kids, but today’s autistic children will become tomorrow’s autistic adults – and once they’re not cute any more or their parents are no longer around to look after them they will very likely continue to need support.

2. I’d like people to be aware that most autistic people prefer to be referred to as “autistic”, not as a “person with autism” (though not all, and it’s always wise to ask people how they like to identify themselves because it’s their choice). My own thought is that “With autism” implies that some version of the person exists “without autism”. But autism is not an “add-on” – you can’t remove it somehow – the only way to make an autistic person “non-autistic” is to murder them, and I’m seriously not in favour of that approach for very obvious reasons! I’d also like people to be aware that many autistic people really really hate “functioning labels”. I have a whole blog post to write, one day, about the use of “high-functioning”, “low-functioning”, “severe”, and “mild” and how utterly inappropriate these terms are to describe an autistic person – autism is a condition that presents in so many different ways in such a variety of people that dividing the autistic population up based on some arbitrary criteria and how they are perceived in the non-autistic world is both nonsensical, and, to many, deeply offensive.

3. I’d really really like ALL health professionals to be more aware of autism and the needs of autistic people. Really aware. So that nobody will ever show up at a GP surgery and be told they “can’t be autistic because they make eye contact” or “there’s no point diagnosing adults because there’s no support”. So that nobody will have to spend years fighting for their daughter to be diagnosed, and go through multiple misdiagnoses because the professionals don’t know what to look for. I spent 20 years in the mental health system – not one of the professionals I saw suggested that I might be autistic – it was left to some friends I met by accident through a couple of my interests to point it out to me, and I then had to battle through a diagnostic process which nearly killed me, and where I encountered a psychologist who clearly knew very little about autistic people, how to treat them, or what some of the characteristics of autism even are. Awareness of autism in the medical profession is still, at best, patchy.

Acceptance

1. Fully accepting autistic people and our ways is, for many people, going to be challenging, and those non-autistics (also called allistics) who lead the way as allies to their autistic friends and family will, to a significant extent, have to fight against their OWN neurologies. I know quite a lot about fighting one’s neurology – I’ve spent 40 years doing it – it isn’t easy. Worrying about “how things look” or “what people will think” has, sometimes, to be ditched when dealing with autistic people. Picture yourself in this situation: You’ve gone out to coffee with a hungry friend – that friend approaches the counter in dark sunglasses and orders their regular coffee and snack without looking at the barista, the snack is sold out, your friend starts to sweat and gets anxious and walks away from the counter, leaving you to choose an alternative snack, pay the bill, and deal with the barista. You get the coffee, take it over to the table, where your friend is sitting, rocking back and forth, and scrolling frantically through their phone. People on the other side of the shop are looking at your friend, who doesn’t thank you for the coffee and barely acknowledges your arrival. A gang of kids comes in and starts laughing at the two of you, your friend starts to wave their hands around, which makes you even more conspicuous, and then screams hysterically, jumps out of their seat, and runs out of the shop and up the road in tears, leaving you to sort out the resulting chaos. If you’re still cool at that point and totally accept that your friend’s behaviour is entirely beyond their control and is the result of their being autistic and you totally accept it all then I think you’re wonderful! And you’ve just had coffee with me on one of the days where I’ve made myself cope in the outside world when I needed to be somewhere, when the option just to curl up and stay at home wasn’t available.

2. Accepting autistic people doesn’t just mean accepting the visible either. I am one of those autistic people who visibly stims. I always have to some extent, and now I know how good for me it is I control it the absolute minimum possible – it’s easy to see. I wasn’t asked about repetitive movements at my assessment because there was no need – it was obvious! With me it’s a case of “love me, love my stimming” – simples!!! However, there are many autistic people who don’t visibly stim, who might be waggling their toes inside their shoes, or subtly pressing parts of themselves against something. There will be nothing to see, but they might be finding it really difficult to follow a conversation or cope with being downwind of someone wearing strong perfume. They might have changed their clothes 20 times before leaving home because they were having a bad sensory day. They might have spent the previous night in tears because their favourite blanket was in the washing machine or the shop had run out of the only thing they could possibly eat for breakfast. They might, themselves, be anxious about asking for adaptions and not be quite as brazen as I often am about such things (sometimes I’m very brazen, other times I find it more difficult). Accepting the invisible can be particularly challenging for many people, but to fully accept every autistic person it is essential – the words “but you don’t look autistic” can, I’ve read so many times, feel invalidating and hurtful. Personally, I’ve never had those words said to me (see the start of this paragraph, which probably explains why), but not every autistic person is like me, and questioning somebody’s identity based upon some kind of stereotype of what autistic people are supposed to “look like” is really not cool. Autistic people are varied in their looks and behaviour, just like everybody else!

3. Because autistic people have different ways of perceiving the world and quickly become overloaded, especially in certain environments and around people, we need a LOT of downtime. Accepting that your autistic friend is still your friend and still values you even though they’ve cancelled your meet-up yet again is tough, but is part of the acceptance. Sometimes we really do need to be alone and stare at the wall – maybe for several days. We often need to do things that seem, from an allistic, social, point of view, rude. I am much more likely to be able to cope with having dinner with you if my phone is on the table next to me and I take breaks from talking to you to play a game or retreat into cyberspace – this, I understand, is regarded as rude in many social circles. It is not rude – it is survival, it is coping with overload. Furthermore, for those of us who are sporadically nonverbal and have times when we can’t speak, such devices are our communication tools, and, often, knowing they are there and we can resort to typed communication provides us with sufficient security that we can actually get through a meal and contribute to the conversation because our anxiety levels are lower. Next time you see a child with an iPad in a restaurant, don’t automatically assume that it’s an example of “bad parenting” or similar – it might be the difference between that family being able to go out to lunch or not. We are not necessarily great communicators – we are unlikely to phone you spontaneously, or be very good at getting back to you quickly (sometimes sending an e-mail takes a lot of effort) and we might miss subtle allusions and misunderstand social codes and we often cope rather better if you talk to us in clear, uncluttered language, but we are nearly always doing the best we can – this means we can get exhausted very very quickly. Many of us struggle to keep our homes tidy and clean – if you visit, do not judge us by conventional standards, because we can’t always keep up in the way that might be expected. “Pushing on through” when we are finding things difficult is often, for us, NOT the answer, and might actively damage us (Note: I am aware that some of this doesn’t just apply to autistic people, and there are many others with other conditions who have similar struggles). We can’t operate with the same set of conventions that many other people can because we’re working on a different system with different energy levels.

Appreciation

1. Although we do need time and space, many autistic people really really want to participate in life. If you want to appreciate our enthusiasm and skills, then bear with us and KEEP INVITING US! Sometimes we will have the energy, and we will want to spend time with you and enjoy the things we have in common with you. Sometimes, even if we can’t make it, we will really value the invitation. Many of us have a lot to offer, and we’re happy to share our time and skills with you, even though we’re not often the greatest publicists on the planet. To fully appreciate autistic people takes time, and possibly a little more effort than is usual (believe me, we’ll be making as much effort as we possibly can – it goes both ways – many of us are doing our absolute damndest to fit into the world, even though it is incredibly difficult). Many autistic people have a great deal of knowledge about a great many things – we’re often prolific learners and when we’re interested in something, we can become VERY interested in it indeed – some autistic people can make great careers out of their interests and appreciating talents is just as important as supporting through the difficult bits. (I realise I’m using “we” here, without having consulted with any other person, but I hope you’ll forgive the generalisation based only on my observations thus far – I do make an attempt, from time to time, not to make all of this exclusively about me, because, lovely as it is to be appreciated, I’d really like all other autistic people to enjoy appreciation too). Don’t give up on autistic people because we need a bit of extra consideration – there are autistic people who never speak but write books, and there are autistic speakers who can present brilliantly but miss out on the opportunities for networking in the bar afterwards, and so on. Being autistic is an important part of an autistic person’s identity, yes, but so, often, is being an artist, musician, scientist, poet, writer, sportsperson, someone who cares for animals, and all manner of other things. Appreciate all this stuff for its own sake too! Never underestimate what is going on in our heads, even when it’s not immediately apparent from the outside.

2. If an autistic person shows up at your party, or comes to your event, or spends time with you, then appreciate this – they are likely to have put in a huge amount more effort to have shown up than most other people will have. This statement is in NO WAY intended to induce any sort of guilt or to stop you sending invitations (see above), but just to make you aware that what you see on the surface might not be the full story. I am currently at the stage where, in order to recover from any major time out in the world, I need two full days blank in my schedule where I am mainly alone, mainly in a dimly lit place, and free to stim for hours or watch the same film on repeat, or similar. But most people who see me out in the world will not know that. Most people who watched me play in a concert the other night will be unaware that I spent two full days with a blank diary earlier in the week in order to prepare and that I now have two further blank days in order to recover enough energy for next week’s commitments. Being autistic means, as I’ve already mentioned, getting more tired than most people who do the same stuff. Appreciating the effort made might often mean just being aware of that effort, and, when somebody turns down an offer of a post-gig drink, for example, don’t argue with them or push them, don’t feel slighted when they need to take time out or sit on their own during a tea break, or can’t contribute in quite the same way as everybody else – appreciate the effort that has gone into being there at all, and know that you are the recipient of massive amounts of energy because you, or your event, or whatever, is appreciated and valued by them.

3. And, lastly, appreciate what autistic people themselves have to say. There are lots of us around – we’re everywhere, and many of us have plenty to say for ourselves (as you’ve probably noticed) in the form of books, blogs, and so on. As I’ve already mentioned, we’re a varied bunch, and our opinions on things differ depending upon circumstances, background, and so on. We’re not some sort of bunch of “autistic clones” who are all exactly the same as each other, but we do, often, understand each other in ways that, perhaps, allistic people don’t – even the most highly qualified allistic autism researchers and those who care for autistic people do not experience things from the inside, although many of them do make a great contribution, but in a different way. If you want to know what it’s actually like to be autistic, then asking people who are autistic is, perhaps, a good place to start. Many of us are glad to be asked (though we might take a little time to respond, and, remember, our ways of communicating responses might be a little unconventional). I am, of course, all in favour of autistic appreciation – any time anybody wants to appreciate this particular autistic (and their blog), you’d be very welcome. Appreciation in the form of good lattes, wine, cheese, nice soap, and an endless supply of fuzzy tangles is particularly welcome!!! 😉

As to lighting anything up blue, please don’t. There are various other campaigns such as “light it up gold”, “red instead”, and even “tone it down taupe”, which are, I believe, initiated by the autistic community. I have gone for the colour orange at the top of this post – orange is reasonably close to red, gold, and taupe, and is also the complete opposite to blue on the colour wheel. Thought that might be appropriate!

My “awareness, acceptance, appreciation” duties now discharged as best I can on this day, this blog will now continue, quietly, to do whatever it does in its own way.

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!

Looking at Eyes

I was chatting on Facebook messenger with a friend of mine. We’ve been friends around 5 years, and she is probably, after my husband and best friend, the person I see most regularly in real life.

“So what colour are my eyes then?” she asked.

I paused for a moment, thought about her hair, which she dyes dark red, and it seems to match her skin, so I guess that before she dyed it it must have been dark. “Brown!” I respond.

“Er, no, they’re blue actually.”

She then asked me about the eyes of a mutual friend who I also see quite a lot in real life. Even darker dyed hair. I was confident about this one. Much more obvious. “Definitely brown,” I said.

“Nope, wrong again, she’s another like me with dark hair and blue eyes, except that hers are greyer than mine.”

I really wasn’t very good at this eye colour game. So far 0/2 on the eye colour score!

“Her mouth wiggles a bit at the corner sometimes and your teeth point inwards,” I proffered, in an attempt to show that my observation skills weren’t completely up the spout and I hadn’t been ignoring my friends for the last 5 years!

She laughed! And told me that this was further proof of her observation that even before I had the slightest clue that I was autistic my eye contact skills were, at best, somewhat idiosyncratic!

***

I was in the kitchen with my best friend. He asked me if I knew what colour the eyes of a mutual friend of ours were.

I thought about it. Our mutual friend has grey hair. I think it might have been dark when he was younger. Somehow I couldn’t quite imagine what colour eyes he might have though.

I admitted I didn’t know, and that if someone really needed that information from me then the only way I could supply it would be by looking at a photograph.

***

I mentioned eye contact in an earlier blog post. A discussion ensued on my Facebook wall. Somebody I went to school with between the ages of 13 and 18 commented on the discussion. She clearly stated that she remembered that whenever she looked at me I would look away very very fast. She said she thought at the time it was something that “clever people did.”

***

My husband says that when I do look in his direction I then don’t look away when most people would. He says it’s as if I point my eyes in that direction and then just forget and leave them there. It always slightly freaks him out!

***

So, it seems that I have been “faking it” as far as eye contact is concerned, probably all my life. I’ve certainly never been able to glean information about the state of a person from their eyes, beyond such things as closed = maybe asleep, or tears = maybe sad or happy. I’ve also observed that even when watching television I don’t look at eyes. I go through my life and think of people I know or have known quite well – relatives, friends, former colleagues. I cannot picture what any of their eyes look like. I know they must have eyes, but I cannot visualise any of them. But I can easily visualise mouths and noses, and, in some cases, ears.

This faking really has been fake. Even when I’ve apparently been looking at eyes, I haven’t taken in any information about them. I cannot picture what my own mother’s eyes look like. Not a hope.

This is still news to me. I wasn’t aware of anything beyond remembering instructions given to me as a child, probably by schoolteachers (I can’t remember) saying “Look at me when I’m talking to you!” So I did as I was told. For the next 40 years.

So why have I been faking it? Why is looking at eyes so weird?

I believe that the schoolteachers probably wanted me to look at them because they thought that it was an indicator that I was paying attention (which it wasn’t – I was, and still am, perfectly capable of paying attention to what someone is saying without looking at them – probably rather better that way in fact). I have also looked at fellow musicians when playing chamber music and so on, and again I think it’s just a sign to people saying “I know you’re there, I’m listening to your part, and I’m paying attention.” It doesn’t actually help me to pay attention, but I know that people think you’re paying more attention if you look at them. It’s a learnt fact and a practised technique. It’s been a large part of the mask. But as far as communication is concerned it’s meaningless to me except to show that I’m paying attention.

And, it seems that while I’ve been faking some sort of approximate eye contact I’ve been using massive amounts of energy to do so (as described in An Experiment) and been pretty much avoiding the real thing whenever possible.

And all this while not even knowing I was autistic. I had no reason to avoid eye contact. Not anything tangible. But I did this fake thing for decades. So it was obviously something that wasn’t quite comfortable for me.

And so recently I’ve tried to describe what actual eye contact (from the few moments it has happened unavoidably and sort of by accident, when I haven’t moved my gaze fast enough) actually feels like to me.

And the best I can come up with is that it feels a bit like being naked in public in front of an audience somewhere very very important and totally overwhelmed in a way I can’t describe, and a bit like being poked with a sharp stick.

Which, when I put it like that, explains perfectly why I’ve faked it all my life and why I will now only even attempt it when absolutely necessary. Eye contact might be some wonderful communicative thing in some people’s worlds, but in my world it’s just rather creepy and uncomfortable.

I’m eccentric, but not “get naked in front of an audience until my brain explodes” and “be poked with a sharp stick” sort of eccentric!

The Day After

54-2016-12-29-17-00-12I was up for four hours
Then tiredness set in.
The familiar exhaustion.
The partial shutdown.

I was wise to allow for recovery.
Even pleasant times tire me.
A reminder not to book events
On consecutive days.

It sometimes feels unfair
That I have to plan and recover.
Restrain myself
From living a full life.

Because I am not one who prefers
To hide in the shadows.
But my neurology
Forces me to retreat.

At least I now know I can
Spend an evening with friends.
And survive, and enjoy,
Which is progress.

I just need to remember
That I need to take
More downtime
Than most people do.

Out to Dinner

53-2017-01-28-14-04-07A few weeks ago I got a message from a good friend of mine. He and another couple of friends were planning on dining in College, as they do from time to time, and he wondered whether my best friend and I would like to join them, as we do from time to time. It’s usually a very pleasant evening, and a chance to catch up with people we don’t see that often, especially as the friend who sent the message lives abroad and travels a lot.

Usually I’d message back by return and get signed in to dinner straight away, no question, the only limitation being whether I was already booked to do something else that evening. However, even though my diary is looking really really empty at the moment, I hesitated. An evening in College can be very tiring, as I described in Sudden Illness, and in my current state of burnout I really didn’t know whether I could cope with it at all.

I sought advice from my husband, who is often wise in these situations. He suggested I sign in anyway and then cancel if I really wasn’t well enough. It seemed like a good plan, so that’s what I did. I rather hopelessly didn’t manage to message my friend back, but I did at least sign in, and started to prepare for the biggest social thing I’ve done for many months. At the time I signed in I didn’t know whether such an evening would be totally beyond my capabilities, but I thought I’d give it a try.

And so the strategies went in to action, and a rather embarrassingly large amount of preparation and thought went into a simple evening out to dinner.

First, the diary. I made sure that I didn’t push myself or attempt to leave the flat for two full days before the day of the dinner. Enforced rest. Enforced quiet. Save energy. Save save save. On the day itself, I made myself rest in bed all morning. By the time the anxiety kicked in mid-afternoon I was up, but under my weighted blanket in the dimly lit sitting room, exposing myself to as little input as possible to keep my energy as high as it could be.

I also decided to wear as comfortable clothes as I possibly could within the constraints of looking “reasonably tidy”. A pair of elasticated trousers I usually wear for concerts, a soft t-shirt, a fleece jacket, and a soft scarf. Fiddle toys in the jacket pocket, chew toy round my neck under the scarf. Absolutely everything as easy as it could be and as comforting as it could be. And, of course, the tinted glasses that have now become my usual eyewear.

I expect I’ll do quite a lot more of this sort of thing in future and much of it will become automatic for me, but for the moment a lot of it is new, and a lot of these things are things I’m trying to see if they work and see if they help me conserve energy to do the things I want to do without getting as exhausted and stressed as I have done in the past. I’m experimenting to see how much rest I need beforehand, how much recovery time, what sort of balance I need to achieve between behaving as a reasonably responsible adult in public and being as comfortable as I can in different situations, and what strategies I can employ to help.

I also made the decision not to drink more than a taste of each wine with dinner and to drive home afterwards, partly because introducing a lot of alcohol into the mix might alter my sensory or social responses in either direction, and partly because I could go home to a place where I had the comfort and safety of my own rules, my own familiar arrangements, my sofa and telly and weighted blanket and so on, with no need to pack any bags or do anything beyond getting through the evening and then driving a familiar route home. I’ve mentioned before that driving is one of the things that comes naturally to me and I can do quite comfortably even when very stressed about other things.

Going home had the added advantage on this occasion of complete solitude because my husband was out speaking about mental health issues and was then planning on a working night, and was also going to be out for most of the next day, so not only would I wake up in my own bed, I wouldn’t have to engage in any conversation at all. If I felt absolutely terrible the next morning then I could just stay in bed for as long as I wanted.

It actually turned out to be a very good evening to have had as my first real social event in many months. There weren’t too many people signed in to dinner, so it didn’t feel crowded or overly pressured. My best friend organized the seating such that I was at the end of the table and he was next to me, so I wasn’t sitting next to a stranger. My other good friend sat opposite, and another of our group next to him, so I was surrounded by allies and friendly sympathetic people, two of whom already knew what had been going on in my life.

Nobody seemed unduly fazed by the fact that I was gently rocking back and forth, and I managed to eat most of all the courses of my dinner (though didn’t push it – tasted everything, but stopped eating long before I usually would). The familiarity of the setting (I’ve been eating in that hall since I was 18) helped a lot, and the dangly bits on the sleeves of my academic gown actually turned out to be an excellent stim toy!!!

Afterwards, something that would usually be a slight disappointment was something that actually did me a favour. The small number of people eating in meant that there was no formal dessert (formal dessert involves sitting at another table, generally more obligation to converse, and following customs regarding port, eating of fruit, and so on). Instead, the fruit was on plates in the Common Room sitting room, so I was able to take my boots off, sit cross-legged and comfortable on a sofa, and be much more relaxed.

And I sat and sipped a cup of coffee, and then some mint tea, and had a chocolate and a raspberry. And played with my fiddle toys a bit, and even chewed my chew toy a bit, and people looked at old photographs, and chatted, and I didn’t make myself chat except when I felt like it, and the evening actually turned out to be quite a relaxed one, surrounded by understanding friends in a non-threatening environment. If I appeared odd to anyone, then they didn’t comment or weren’t worried or both.

I was reminded of the line from Dirk Gently’s Holistic Detective Agency where Reg remarks (on revealing that he’s been living in the same set of College rooms for 200 years) that “one of the delights of the older Cambridge colleges” was that “everyone is so discreet. If we all went around mentioning what was odd about each other we’d be here till Christmas.” There are some aspects of my dark blue home that are very similar to the characteristics of his light blue alma mater that Douglas Adams incorporated into his brilliant stories (side note: count how many “previous blog posts” are shown in the list on each page of this blog – though you probably won’t need to now you’ve seen this remark in the context of this paragraph)!

And so the evening was a success. I drove my good friend and best friend back to their guest house and home respectively, then drove back home myself. When I got back I definitely felt that I’d been through some sort of “assault on the senses”. My ears were ringing as though I’d been at a loud rock gig, and I was slightly dizzy and nauseous and certainly not capable of doing anything more than collapsing onto the sofa underneath my weighted blanket. I stayed like that for about an hour, just curled up with my iPad, waiting until I felt a bit better. After about an hour I had enough energy to rock and bash myself against the back of the sofa, then after another half hour I started to feel distinctly better. I put the telly on, muted, and one small lamp. After a second hour I was well enough to get up and get a glass of wine and put some music on very very softly. Three hours after getting home, I finally had enough energy to have a short bath and get into bed.

I slept on and off for about 4 hours in total, and now, at half past one in the afternoon of the next day, I’m finally out of bed, dressed, and have managed to make myself a cup of tea and write up the evening while it’s still fresh in my mind. I actually feel much much better than I thought I would today – maybe that’s the result of the planning, and the care, and allowing myself the 3 hours to calm down properly before going to bed. I think it’s also a question of managing expectations – I KNEW when I decided to go last night that it was going to be a big deal in the state that I’m currently in (a month earlier and I would have been too unwell even to consider it). So none of it is a surprise. I know why I feel like I do during and after social occasions now, and just knowing means that there is a whole level of worry that there is something ELSE wrong with me that is now gone.

I’m also aware that things will continue to improve for a while yet as I recover from the burnout and as I adapt and get used to how things now are. Exactly how much functionality I’ll regain is still unknown, but early signs are that I won’t actually spend the whole of the rest of my life as disabled and impaired as I was a couple of months ago. Once I’ve stabilized I will be able to do a bit more, especially if I manage my life a bit more appropriately now that I know what needs managing.

This sounds completely mad, writing it up. So much planning for one evening out. Three hours to recover sufficiently to put myself to bed when I got home. Most of the rest of the next day spent in bed. It seems insane from any normal perspective. It must seem mad when viewed through the eyes of the well.

And I ask myself whether one night out to dinner is worth all that effort, and the answer is a resounding YES. Partly because it was simply a lovely evening with nice people and I felt cared for and loved and lucky to be where I was enjoying the food and the company and the surroundings. But also, crucially, because it gave another glimpse back into the “normal” world, a world not dominated by assessments and psychologists and psychiatrists and mental illness and difficulty, and a world worth fighting to get back to.

In many ways it was just a simple evening out, but it was also another of those glimmers of hope that I will eventually be able to function reasonably well in the world again and enjoy some of the things that make life rather better than just “struggling to get through each day”. I used a lot of energy last night, but early indicators are that I actually got some energy back too, which is better than I could possibly have hoped for.