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.

Disclosing Identities

49-2016-12-31-12-56-17I have read several chapters in books and blog posts concerning the advantages and disadvantages of autistic people telling others about discovering they are autistic. As I mentioned in the first post of this blog I was hoping to wait until I had an official diagnosis before disclosing my autistic status to more than a few people who already knew, but since the process of finding anyone who will give me a formal diagnosis is so difficult and could still take many months (I’m rapidly losing faith – my husband e-mailed the triage service again last week to try to ascertain whether there had been any progress at all and has not yet heard back) I had to go ahead anyway – life was simply too difficult when I was keeping something so big a secret.

But being so open about things is something that has, maybe, been easier for me than it is for some people. And, ironically, that ease is produced because I am both privileged in some ways and disadvantaged in others.

First the privilege. I am a white, well-educated, grown-up person. I am literate enough to be able to write coherently and, when my words are good, I’m confident conversing with a wide range of people. I live in a part of the world that is generally open and tolerant to differences (I really hope it stays that way, although, like many, I fear recent events have altered things somewhat – but that is not a discussion I wish to have here and is only mentioned in passing). I rely only on my husband for a living – he knows everything and isn’t the slightest bit worried about any of it. My family seem to be pretty OK about all of it as far as I can tell, and, to be honest, if they’re not, then that’s their problem and they’ll come round to it all eventually or not. My friends are a pretty open-minded cool bunch, and if any of them do take exception then they weren’t real friends anyway so they can just depart and that’ll be the end of it. So far I haven’t noticed anyone treating me any differently from before, and everyone has either responded positively to what I’ve said or has politely kept their mouth shut or doesn’t care anyway. In starting this blog I did put a certain level of guard up against those who might want to cause havoc – maybe there will be some, but so far I’ve been lucky. I also have supportive people around me who will help if that does become a problem.

And then the disadvantage. I am childless and cannot have children. This means that where some worry about any consequences regarding their children if they tell people that they are autistic, I don’t have to bother. It’s simply a part of my life that doesn’t exist. It is one of the greatest sadnesses of my life that I will never have chance to know what it might be like to live in that sort of happy family situation, but in this particular instance it takes off a whole level of complication. I am also unemployed and have been so for many years. My attempts to sustain work have failed over and over again and I eventually reached a level of sickness where I was signed off from work permanently (I’ll write a post at some point about my working life and how it gradually disintegrated). This is bad news in that having a job and being well enough to work would be wonderful from both a life-fulfilment, and financial point of view, but it does mean that I don’t have to worry about telling a boss or colleagues I am autistic or about whether I will keep my job. I have no professional standing in any world, so I cannot lose it! If I ever do get well enough to consider working again then it will have to be as a fully open autistic person, and I might well need many adaptions to working hours, environment, and so on. Even working from home independently would present a massive challenge for me because my ability to communicate regularly is not great and my executive functioning is absolutely shocking.

It also became apparent after the first assessment that concealing my autistic identity was driving me to the brink of suicide. The effort of concealing my new-found knowledge was killing me. The alternative to any consequences of telling the world I was autistic was possibly ending up dead. At that point, as I’ve mentioned in an earlier blog post, I was stuck between a rock and a hard place and the rock was still on fire and had just exploded out of a volcano – so the hard place it was.

At the moment I am still very envious of those who have already received their formal diagnoses, or those who feel comfortably able to live life as self-diagnosed autistics. I’m also envious of those who didn’t have to wait until they were in their mid-40s to discover who they were, and who could adapt their lives and embrace being autistic before they got as sick as I did. Also those who are now receiving their diagnoses as children, who won’t be told all their lives how badly behaved and lazy they are because they have a label that protects them, and who won’t suddenly get a massive shock when they’re middle aged and burnt out, and won’t spend decades in a psychiatric system being subjected to well-intentioned but sometimes harmful treatments. I’m envious of those who have support services helping them, who have therapists to listen to them, and who have had considerate and helpful diagnosticians and so on. Of course I am – I’m human!

But I have also come across stories of people who are much older than I am before they finally discover who they are. I know there will have been autistic people in the past who struggled with life in the way that I struggle with it and who never had any explanation but simply went to their graves thinking that life was really really hard work and difficult and painful. Some will have had even worse times – maybe locked up as a result of other conditions being misdiagnosed (I’ve found tales online of people locked up until their 80s, filled with unsuitable medication, only finally freed from incarceration and a drugged up haze once their autism was recognized). I weep for their lost lives, and I weep for those who I know existed (I was very nearly one of them – my life could so easily have ended in my late 20s) who killed themselves because their lives were so tough, who never got through the burnouts and the breakdowns, and never even discovered they were autistic and that they needed help and compassion and strategies to cope with living in a hostile world.

And I also come across those who are not able to disclose fully their autistic (or gender) identities to those around them. I read about young people, dependent upon their parents for a roof over their heads, whose parents are in denial and don’t want to support them. I know there are people all over the world who don’t have the privileges I do and who are living lives that are not quite right for them and they have no choice about it for whatever reasons.

And yet again I come to the conclusion that for all the comments I’ve had regarding the bravery and honesty of this blog (there have been, embarrassingly, lots), I’m able to be open and honest and write these words because I am lucky.

And it also makes me particularly glad when they help other people in any way.

Mysterious Argument

43-2016-12-31-12-56-27“Oh shit! I’m lost,” was the first thought that entered my mind as I started to calm down, closely followed by “Oh double shit, he’s got the hotel key, I’m going to end up sleeping on the streets tonight.”

I had had a row with my boyfriend. A big row. The sort of row that had led to me being almost physically violent, really aggressive, yelling some fairly colourful language, and then storming off into the dark. Into the heart of a foreign city, very late at night, on my own. I can still see the street in front of me, still hear the French voices around me, still smell the cooking smells and see the people sitting at their tables with their pichets de rouge and so on…

As I stood in the dark and tried to figure out what to do next, given that I’d now landed myself in a rather precarious situation, I also felt rather sad and upset that what should have been a perfectly idyllic wonderful evening in a place I’d wanted to be for so long had turned out so badly. As far as I could remember we’d been planning on having dinner and were in the process of choosing a restaurant from the many available when we’d suddenly got into a huge fight about something and it had all gone horribly horribly wrong.

Fortunately, my then boyfriend, who these days goes by the title of “best friend”, was, and still is, a sensible and caring human being. He did the very best thing possible in the circumstances – allowed me to storm off, but followed me at a discreet distance so I didn’t know he was observing me, and, once I’d calmed down, he approached me and I burst into tears and we took some time out for me to sort myself out before we did eventually find somewhere to have supper. And I didn’t end up sleeping on the streets.

We already knew each other well enough by this stage that he was starting to observe that I had really strange behaviour issues when I hadn’t eaten and that my mood could change rapidly if I was hungry, but that he’d often suggest we should eat and I’d swear blind that I wasn’t hungry, even if, when subsequently presented with food, it then became obvious that I was hungry. There’s a whole blog post to be written sometime about my relationship with food, but for the time being, it was becoming obvious by this stage that I needed feeding regularly, even when I didn’t feel hungry.

So the evening was eventually rescued, and we concluded that we’d had some sort of a fight about something, but we weren’t really sure what, but that it had really upset me, and he apologised and I apologised and we agreed that we needed to go out for dinner a bit earlier the next night to avoid me getting too hungry and things were smoothed over. We went on to enjoy the rest of our holiday in Nice, eating good food, bathing in the Mediterranean, and so on.

The mystery of what the “argument” was actually about remained unsolved for two decades. Even though this incident was around 20 years ago, neither of us has ever forgotten it. Over the years we’ve occasionally discussed it and wondered what we were arguing about, but we’ve never really been able to pinpoint anything. My memory is that something just made me totally freak out and that it must, therefore, have been pretty bad and he must have said something dreadful to me. His memory is that we had looked at the menus of a few restaurants and he’d asked me which one I’d like to have dinner at and I’d suddenly gone totally berserk!

It’s never really made sense to us, and has just become “one of those things” and we’ve laughed about it since, and I’ve said what an idiot I felt when I realised he had the key (afterwards, whenever we went anywhere, he always gave me the key so that I’d never end up sleeping on the streets, even if I did go charging off into the night), and he’s said that he always had me in sight and was keeping an eye on me, and it’s just become part of our shared history as a somewhat bizarre incident.

Until three months ago. Until I started to re-view my life from an autistic point of view. Until I realised that the times I’d suddenly gone crazy while camping over the summer of 2016 were not, in fact, weird panic attacks, but were autistic meltdowns. Until I realised how similar those meltdowns were to countless incidents that had been happening throughout my life.

All these times, a familiar pattern. Suddenly, a switch flipping in my head, feeling like I was going to explode, completely losing control of my behaviour, feeling so totally disorientated and furious and unable to cope, needing desperately either to hit something or to run away from everybody and everything, to be alone, not being able to articulate any feelings or understand what was going on, words gone, the only way to deal with the huge pressure and bad bad feelings to do something physical, to get out the stress and the feelings somehow, a need for people to be far far away, unable to cope with the slightest touch, wanting to be anywhere else but here, massive massive rage, completely involuntary and uncontrollable.

Even sitting here trying to type up what it feels like I’m not really even scratching the surface. Maybe one day I’ll be able to do a better job of describing what the inside of a meltdown feels like, but it’s hard, because part of the problem is that in that moment there are no words for describing, it’s just huge strong feelings of wrong and bad and more wrong and more bad and a big big need for explosion and release of lots of terrible terrible energy…

And that was how I’d ended up standing in a dark street in Nice, thinking “Oh shit! I’m lost.”

It was early on in the holiday, possibly even our first night in Nice, and therefore either the end of the second or third day away from home. We’d travelled from home to London, and picked up the Eurostar to Paris, where we’d then spent a night. The next day we’d crossed Paris and boarded a TGV bound for Nice, a marvellous journey, watching the vegetation gradually change, and heading for the sea and the magic of the south. We’d then checked into our hotel, but were still tired from travelling.

And, as I’ve already observed, food had been a bit sporadic. My routine was out of kilter. I was tired, exhausted. Away from home, and although having a wonderful time, totally overstimulated. Even back then, at what was probably the height of my masking abilities, before mental illness had taken over my life in the way it subsequently did, and as a reasonably young fit woman, I didn’t cope properly with many aspects of “normal” life. Too much of anything too different too quickly often caused me problems, but I coped and coped and coped the best way I could, and adjusted life just enough that I could manage.

However, 20 years ago, I was exhausted after two days travelling, hungry because I hadn’t eaten for a while, and out of routine and away from the comforts of home. And my boyfriend did something as simple as asking me to choose a restaurant for dinner, to make a decision. I am not very good with quick decisions anyway. And at that moment I was totally incapable of making a decision. And my mind exploded. And I had a meltdown.

But we didn’t know it was an autistic meltdown until 3 months ago. Two decades of wondering what the mysterious argument was about are now at an end. There was no argument. My system was simply overloaded and I could no longer cope.

Another mystery solved, simply by knowing that I’m autistic!

The Wonderspouse

42-2017-01-10-20-23-55In my post Disintegrated Mask I mentioned several features that are not uncommon in late diagnosed autistic adults who have struggled with their condition for decades and never really managed life successfully. I have many of the problems mentioned in that post (unemployment, debt, and so on), but there is one I don’t have, and I always slightly wondered why. The discovery that I am autistic has also solved the mystery of a part of my life that has worked, and has made clear just why it has worked!

I’m happily married and have been for nearly fifteen years! In fact, personal relationships, although they’ve usually been fairly unconventional, have been one area that I’ve found relatively easy to deal with – and much much easier than forming ordinary friendships. Admittedly, most of my relationships prior to that with my husband have been with men who were much older than me (I very much fulfill the autistic criterion of having “age inappropriate friendships” in this respect) and they have all been part time, for either geographical or other reasons. The only time, prior to moving in with my husband, that I did attempt to live with anyone else it ended up with me getting half strangled and covered in bruises in a domestic violence situation – I’m now wondering whether some sort of autistic naivety landed me in that situation and I was unable to read the signs of how badly controlled I was being long before it reached the stage of actual physical violence. Doesn’t really matter since it’s ancient history now in any case.

However, I did eventually marry – an old friend from College, and, although it’s a very successful marriage, I’ve never really been able to work out quite why it works, or exactly why I selected him – the best I could come up with, while giving a speech at my wedding to all my assembled friends, was that he was the only person I’d had round to my flat who I wasn’t thoroughly relieved to see the back of when he left! I do wonder how anybody’s still speaking to me after that, having basically told all my friends that I liked them best when they went home, but maybe they knew what I meant. I certainly saw marriage as a big sacrifice of my own place and my personal space, but I also wanted a family (that didn’t work out too well), and, with hindsight I really couldn’t care for myself properly on my own – when we got together I was stuck in my flat and falling apart very quickly.

He wasn’t doing that well at the time either. He was in even worse financial shape than I was (which was an achievement in itself), having had a complete breakdown and a fear of communication that had led to him not opening any post for 6 months and he’d had his phone cut off. He and his cat were on the edge of being thrown out of their dwelling, and he was in a job where the boss only paid him from time to time when he felt like it, which didn’t help matters. He sent me a speculative e-mail from an internet café, inviting me to meet his cat, cooked me a couple of meals, and we got engaged. No dating, no romance, more a question of having reached almost 30 and thinking that this was probably a good idea! It was most definitely NOT how it’s shown in the movies!

And so we got married. And we’re still married. And we’ve survived quite a lot – seven funerals in the first two years of our marriage, and lots more deaths since, infertility and coming to terms with childlessness, many breakdowns and near suicides, near bankruptcy on many occasions and huge debts throughout, unstable housing, culminating in having to move very quickly a few years ago, job losses and redundancies, and trying to cope with the fact that we are both, clearly, very mentally ill. He can’t drive, so I do that bit. I can’t cook, so he does that bit. We have some sort of inbuilt sensors that detect which of us is the weaker at the time and the other one does their best to keep us surviving along the way.

We’ve also had quite a lot of good stuff too. It hasn’t all been doom and gloom. During a time when our manic phases aligned and coincided with the rise of budget airlines we went zooming round Europe for a while. We’ve visited art galleries and interesting buildings around the place. We took up ultrarunning a couple of years ago and did couch to 100K in 9 months. We’ve supported each other in different interests – I’ve been to performance poetry, he’s been to music, and so on. And we have a massive shared interest in small animals – during the course of our marriage we’ve shared our lives with a total, so far, of 10 cats, 5 guinea pigs, 11 hamsters, and 252 rats!

And it seems to work. We never row. We often chat by facebook message rather than having actual spoken conversations. We spend a lot of time immersed in our own things. We have never, ever, gazed into each other’s eyes, because that would be weird. When I read the articles on the internet that purport to tell me what the features of a successful marriage might be I get the impression we should have been divorced long since. We are not really “romantic” in any sort of conventional way. We spend a night apart from time to time, which seems to benefit both of us. And we’ve lived, as I described in Further Reasons, as a fairly self-contained unit of two.

But exactly WHY he was the right person to marry, and why it works as it does, has been a bit of a mystery to me. I had expected to marry a musician, or, at the outside, a scientist, since science is one of my other big things. He is neither, although he is startlingly intelligent and has an incisive mind that surpasses mine by miles. He is, however, what people might describe as “a bit eccentric” in many ways. He’s not what you’d call a “people person” and our early attempts to do normal couples-type socializing didn’t really work. He likes to multiply eight-digit numbers together in his head for fun. He finds parties and talking with any sort of background noise very difficult. He has almost “whisperer-like” qualities with animals. He likes to sit in the dark. He constantly twirls his wedding ring in his hair. He is terrified of using the telephone. He can be brilliant academically, but couldn’t manage to learn to drive a car. He is very significantly underemployed for his qualifications and evident abilities because he has also struggled with life in the same ways I have. When we were first together he only ever looked at me, even when he was talking to someone else, which was somewhat disconcerting. He’s always said I was easier to deal with than most people because I just say things as they are. At the meeting we had with the minister to discuss our wedding arrangements he sat, almost all the way through, staring at the floor, rubbing his foot back and forth on the carpet, and making grunting noises. The minister looked at me as if to say “Why are you marrying this man?” and I had to admit that I didn’t really know but that he’d been a mate for a very long time and we’d decided that we might as well get married and I just knew, for some reason I was completely unable to explain, that it was the right thing to do.

And now it all makes sense.

Where I was, supposedly, the social and outgoing one of the two of us, without the faintest clue that I might be autistic, he has always been more obviously introverted where social functions are concerned. Over the years, given his general lack of sociability and obvious eccentricities, people have occasionally said that he’s “a bit aspie” (a term that didn’t really meant much to either of us, but we guessed it was something to do with his being good at numbers and antisocial in a sort of general way), and it’s always been there, in the background, that he’s been one of the more unusual members of society, and that I’ve been his guide through the social world!

And so, one of the other really big surprises in all this is that it’s me going for an autism assessment and writing an autism blog, and not him. Had you asked me a year ago which of us was more likely to be autistic, it would have been him. We’ve sort of known for years that there was something slightly different about him, but only vaguely. His gradual awareness of his autistic characteristics has been like one of those Hawaiian volcanoes – gently churning out lava, but not really doing much damage, and not really attracting a huge amount of attention. I was more of a Mount St Helens – a sudden catastrophic explosion and trees scattered like matchsticks on the remains of a smoking mountain.

But as we’re reading the autism books and learning about communication and sensory overload and executive functioning and stimming and demand avoidance and so on, his life is starting to make more sense too. We are spotting things that have slightly mystified us throughout our marriage about BOTH of us, about the way we are both so very very capable at some things, but so utterly unable to do others, about how we each compensate for the other, about how he is able to see what I need in terms of care because he knows it from the inside.

Whether he will ever go for any sort of formal assessment or diagnosis is unknown at this stage. We are not thinking too far ahead at the moment because there is quite enough to deal with in the present, and, given how difficult the process of getting a formal diagnosis evidently is, it will be entirely up to him whether he wants to pursue it. He has, in many ways, been more sensible than I have over the years. His underlying personality is more introverted and he’s stayed away from social events and realized much earlier than I did how much energy they take – he had more difficulties when he was younger but has balanced out as time has gone on. I have continually thrown myself into social situations because I didn’t realize how much damage I was doing, so have crashed more spectacularly later on into adulthood. Our traits have manifested themselves somewhat differently over the years.

What is clear is that we’re now learning a lot about how we both work – and this is not just about me. And what is also now clear is why we got married in the first place, and how we have managed to stay married for nearly 15 years. Without having the faintest idea what it was that had drawn us together all those years ago, we had spotted something that made sense, and seen in each other something even more important than being a musician or a writer or whatever, something that we both had in common, even though we didn’t have a word for it. We didn’t discover that word was autism until a few months ago!

My best friend once said to me (long before I actually got married) that if I was ever to marry he thought that I’d have to be rather lucky to find somebody who could cope with me because I was definitely something of a “specialist taste”. He was right. And he didn’t know why at the time either.

Fortunately I did get lucky!