Career Snake!

63-2017-01-02-18-20-57The statistics are, it seems, pretty grim. I haven’t verified the numbers, neither can I give you any details about how many of those considered are formally diagnosed or anything, but I continually see figures indicating that only around 16% of autistic adults are in full-time employment and 32% in any form of employment at all. Even if we allow for quite a lot of error in those figures and consider that there might be people who are unfindable by official statistics compilers, it would still turn out that the proportion of autistic adults sustaining employment is pretty low, and that many of those who do have jobs are working well below their capabilities skillswise owing to the social, sensory, and organisational demands of most jobs.

I have been sliding down the career snake all my life. Despite my issues at primary school and continual bullying through secondary school, I did manage to get quite a good bunch of qualifications, as I mentioned in Expectations Gone. Admittedly, I dropped out of my first degree course, having entirely failed to do what was expected of me or to settle into any sort of proper work routine, but I did manage to succeed second time round and graduated with a good degree. Had you known me in my late teens and early 20s and looked at my qualifications you’d have predicted a bright future for me as far as employment was concerned. The Strong Woman mask also projected an air of confidence that would have added to this impression and it looked, back then, as though I was headed for great things – all I needed to do was put in the work and everything would be fabulous!

However, it was not to be. I did put in the work, lots and lots and lots of it. I based my ambitions on trying to find a career I loved that was compatible with the qualifications I had, and I worked and worked and worked at it. When obstacles were put in my way (I didn’t receive funding to do my master’s degree) I did everything I could to overcome them (got a job to fund myself through and took out a loan to pay the fees). I went without food and heating to save money in order to carry on studying to become an academic because that was the career I really wanted, and I worked until I could work no more.

I had fallen into the trap of believing the idea, still perpetuated today by some of these awful “life improvement” memes, that if you wanted something badly enough and you worked hard enough for it, you would get it.

That is, of course, a fallacy. You are unlikely to achieve your goals if you DON’T work for them, true, but you can’t reverse that statement and say that working for them means you WILL achieve them. It’s simply wrong.

But back then I believed that working hard was the solution. So I did. And by the time my ill-fated DPhil degree studies started to fail I was almost at snapping point with anxiety, financially in trouble, drinking heavily, and dissociating regularly. I didn’t know then that what I was experiencing was dissociation, but I do now. It was with considerable sadness and regret that I abandoned my studies, and with them my dreams, and decided that I simply couldn’t manage to achieve what I’d so badly wanted.

At that point I had no idea that I was even mentally ill, although I evidently was, very. I had no way of asking for help because I didn’t know what sort of help I might need. I had no concept that I had impaired executive functioning and organizing my life and trying to take care of myself while studying almost unsupported and while chronically short of money was simply beyond my abilities. I had the exam results and I believed, therefore, that the only reason I was failing was that I wasn’t putting in the work. It was the only reason I could think of.

A year later, armed with my original degree, I enrolled on a PGCE course. If I wasn’t going to be able to do research and teach undergraduates then I would modify the plan and teach schoolchildren instead. I turned out to be a pretty good teacher. I did well on the PGCE course and got my first job easily (my qualifications were somewhat over the minimum requirements, and my ability to teach “shortage” subjects proved useful). I started my new career, confident that this time all would be well.

Less than three months into the job, all was not well. There was definitely something very wrong with me. I was struggling. I went to my head of department and told him that things weren’t right. He told me that people as clever as me didn’t have problems and I’d be fine. I upped my work level to try to compensate for the things that were going wrong. It didn’t help. I went back to school after the Christmas holiday period and by February I went in search of a doctor because I felt so ill. I got to the surgery and collapsed onto the floor, hardly able to speak. The doctor picked me up and let me recover and I was then signed off work with “debility”. Nobody could really work out what was wrong with me, but I was clearly very unwell. The “debility” label was changed to “anxiety and depression” shortly afterwards and I entered the world of the mentally ill.

I decided that maybe that school had been too unsupportive for me and got another job in a very different school. I did slightly better for a while, but while there my mood started to become chaotic and elevated, and I went into a hypomanic phase (again, not known at the time, but obvious with hindsight). I was also still unable to survive financially – my starting salary was insufficient to cover the rent on my London flat and to service the massive debts I’d incurred while studying. So I applied for a promotion to Head of Department in another school, and got it!

Only a few weeks into the new job I had the breakdown that is now known as “the big one”. It is now evident that I was also in a period of huge autistic burnout. I made my first serious suicide attempts that autumn. My health was destroyed. I never fully recovered from that time, and the slide down the career snake accelerated massively. My days as a high flyer were over and it became a matter of “damage limitation”.

After I’d recovered sufficiently to rejoin the world, helped by my newly acquired husband, I did a bit of supply teaching, and got a part-time job for a while, but I wasn’t really up to it any more. I then had a succession of office jobs – administrator, data entry clerk, personal assistant, and eventually part-time administrative assistant in a small office. All of these jobs I found hugely exhausting and very very difficult. I would be struggling to drive home after a few hours at a part-time job, my eyes almost closing at the wheel. It didn’t matter how early I went to bed or how much exercise I took or how well I ate. I was just knackered. All the time. I finally went off sick from the last job, having, by this time, received a diagnosis of bipolar II disorder, and at the last meeting I had with my boss, the person from occupational health, and the personnel officer for the job, I was almost completely unable to speak. I had come to the end of my office work abilities.

Having failed as an academic, a schoolteacher, and an administrator, I had one last attempt at earning money for myself before succumbing to another cycle of hypomania and depression and breakdown. I answered an advertisement in the local newsagent from a woman who needed a cleaner one day a week. In some ways it was quite a good job. Although the pay was poor and I worked 5 hours without a break, I was often on my own, and I was quite good at it. It was hard physical work as I was expected to do the whole house, change beds, completely clean several bathrooms, and leave everything pretty much immaculate, often after the family had evidently spent a weekend partying. Eventually, however, 5 stone overweight from the quetiapine I was taking, my back and hip gave out under the pressure, sacroiliac pain radiating throughout my body, leaving me unable to walk, let alone clean an entire house in 5 hours. The woman also gave up work temporarily to have another child and I found myself having to cope with people around me and the new baby while I was working and it really wasn’t worth the pain and the triggering effect of the children in order to earn somewhere around what was minimum wage at the time.

By then I had a psychiatrist and a community psychiatric nurse. Both helped me back to some semblance of a life, and I gave up the idea of working completely because it was obvious by then that I wasn’t well enough. I recovered enough to do a part-time language teaching course, but the experience of the course left me needing months to recover. I started studying mathematics with the Open University in order to try to do something with my brain and, rather ambitiously, against all medical advice, did some supply maths teaching in a local secondary school. On the morning of my third day in the job I sat in the school car park in tears of utter exhaustion, knowing that it wasn’t going to work. I loved the job, I wanted to do it. I wanted to be out in the world, teaching, being part of something. But I just couldn’t. Every time I tried I just fell apart and felt so horribly horribly ill the whole time.

I have not worked since I left that job 6 years ago. For nearly a quarter of a century, while many of my peers were climbing some pretty impressive career ladders and becoming academics, businesspeople, scientists, professional musicians, headteachers, top administrators, and so on, I was sliding down my career snake. And no matter how hard I tried to climb back up the snake, the gravity was too strong. And every time I grabbed at a rung of an adjacent ladder, the rung broke and I slid yet further down the snake, before eventually falling off the bottom of its tail, onto the floor.

And it didn’t ever quite make sense why this kept happening, why I couldn’t keep the jobs. It didn’t add up that someone with my qualifications and evident abilities and absolute fierce ambition and desire to work and preparedness to graft and to put the effort in, couldn’t keep even the simplest of jobs. There seemed to be no reason why things just kept going wrong, time after time after time.

Even bipolar disorder didn’t explain it. My bipolar disorder is cyclic. I have hypomanic episodes every few years which lead to crashes into depression. Between those times I am usually stable, moodwise. I have also taken effective medication and developed strategies to help with managing my mood. The treatments and therapies I received for bipolar disorder did, in general, work for bipolar disorder.

But even in the stable times I was still getting sick, and sick in a different way, not a mood way, but an utter exhaustion and unable to cope and having to go off and be silent on my own sort of a way. In a way that has been a mystery for years.

Until I discovered I was autistic. And suddenly those things make sense. And all the failed careers and the lost jobs and eventual unemployment have an obvious cause. Throwing myself constantly into such busy overstimulating environments for years and years has, quite literally, broken me, over and over again. I never had a hope of doing most of those jobs – not because I’m lacking qualifications or not making the effort, but because I am simply unable to cope for extended periods of time in environments that are so hostile to me.

Misunderstandings

61-2017-01-14-16-41-18“Big or small?” the barman asked.

I couldn’t believe my ears. Had he really just asked me that? This was just an ordinary pub, nothing particularly sophisticated, the sort of place where you order a pint and a steak and chips at the bar and eventually someone brings it over to a table with a gold number screwed into the corner.

We’d ordered our drinks, which were now sitting on the bar, and were just completing our food order. Steak and chips or something like that. Then the barman asked if we wanted any side orders. I thought that onion rings would be nice, so I said “Onion rings please” and received the answer “Big or small?”

I stood there at the bar, absolutely amazed that the pub sorted their onion rings by size. Utterly unable to comprehend this level of onion ring detail. I guessed that the big ones came from the outside of the onion and the small ones would maybe come from the middle. I thought the small ones would probably be quite cute.

I turned to my husband and asked him what he thought. He suggested big, and said that he might steal a few. I told him that he could steal a few if I had small ones…

And, of course, he laughed, because, on this occasion he’d understood correctly and I’d understood wrongly. This wasn’t anything to do with the size of the onion rings, but the size of the PORTION of onion rings. I’d completely misunderstood the barman’s question and gone off into a reverie of onion ring categorization that would probably only ever occur in some sort of gastronomic competition – certainly not in a very ordinary pub.

This is the sort of ambiguity that most people’s conversation seems to be full of, the sort of thing that people are supposed to understand as if by some sort of magic. The sort of thing that I’ve been trying to learn all my life, and have never quite got right. Close enough for survival most of the time, and because I’m generally quite affable and quite content to laugh at my own mistakes, it’s all just been put down to being a bit eccentric. Furthermore, there have been occasions where people have laughed at me and I’ve wondered what the joke was, until I realised I’d misunderstood and they’d actually assumed that my suddenly talking about, for example, miniature onion rings, was in fact my quirky sense of humour!

My husband is not immune to the “literal effect” either. He once volunteered to help at a party (partly because he had to be at the party and helping is one of his ways of avoiding having to make small talk – in general he’d much rather work than chat), so the hostess of the party said it would be really helpful if he could gather up empty glasses from around the house and take them to the kitchen.

A simple and understandable instruction – empty glasses to kitchen. Easy.

So, every time he saw an empty glass he took it to the kitchen. Each time someone took their last mouthful of wine or beer or whatever and put their glass down, he swooped in and took it to the kitchen, before there was even a microchance that it might be refilled.

The consequence was that people kept having to get new glasses and the supply of glasses ran out about half way through the party and the glasses had to be washed up so that people could carry on drinking.

But the instructions were clear – empty glasses to the kitchen, so that’s what he did!

I’ve apparently been making similar kitchen-related mistakes for many years. I go to have lunch fairly regularly with my best friend and his wife. I sort of know that I should help somehow, because my husband has told me that people are meant to offer to help in the kitchen, but to be honest it always seems so terribly complicated that I just sit there and hope that if I’m really needed to do something then someone will ask me – communal working is something I find really challenging.

Occasionally my friend’s wife has handed me 3 plates and asked me to put them onto the table. I have done this, reliably, exactly as instructed, for around 20 years. I take the stack of 3 plates from her and place them on the table.

About a week after it became obvious that the autism hypothesis was true and I told my friend and his wife that I was autistic, she suddenly said how much sense it made, and immediately mentioned the plates. Apparently for around the last 20 years, when handing me plates to put on the table, what she’s actually meant is that I should LAY the table, putting plates in situ in front of the places where people sit. And similarly with knives and forks.

I have been completely clueless about this hidden meaning. She’s always thought I was being slightly obstinate and unwilling to lay the table. I’ve believed I was doing exactly as I was told!!!

It seems that there are hidden messages all over the place in human communication that I often miss, even when they are apparently clear and written down.

Around 20 years ago I had a boyfriend for a year or so, and, as it became obvious that the relationship wasn’t going to be a permanent one and we started to drift apart, we both started to go our separate ways and move on. It wasn’t an acrimonious parting, just a recognition that things were now over.

I then got a new boyfriend, and started to move on with my life, and shortly afterwards received a letter from the old boyfriend. In this letter the old boyfriend wished me well, and told me that he had a new beautiful girlfriend and was very happy spending time with her now (or words to that effect). I read the letter and thought “That’s nice, he has a new girlfriend, I hope she treats him well and they’re happy together.”

The next time I saw my new boyfriend I reported that the old one had now moved on and showed him the letter. He took one look at it and said “There is no new girlfriend, he’s trying to get you back.” I was completely gobsmacked and couldn’t believe it for one minute. If he wanted to get me back then why on Earth would he invent a fictitious girlfriend? Why not say “I miss you, is there any chance we can see each other again?”

But my new boyfriend was right. Not very much investigating showed that at that time the old one didn’t have a new girlfriend. And the letter was just some sort of ploy – apparently I was supposed to feel jealous or something. One which, of course, completely backfired because I had no way of understanding this sort of game, no way of comprehending that there was some sort of hidden message in the letter – like almost everything in life, I simply took what it said at face value.

There have been many of these sorts of incidents over the years – too many for me simply to have been “a bit slow on the uptake” or to have just ordinarily misunderstood quite so often. I’m certain that everyone misunderstands communication from time to time, but I seem to do it rather more often than most people do, and I know I spend a lot of time deconstructing sentences in my head, trying to work out exactly what they mean and attempting to understand what the other person is really saying, and I often get it wrong. I’ve learnt and learnt and learnt to try to read what people mean when they communicate, but there have always been holes in the learning, and I’ve always been thinking very very hard and very very consciously about what things can mean. I learn from each mistake – I now know that onion rings come in portion sizes, not actual sizes, I now know that putting things onto a table sometimes means laying a table, and I now know that boyfriends pretend to have new girlfriends as a way of trying to persuade old ones to return to them. But all of this is learnt, consciously learnt, one mistake at a time, and I still don’t really understand why people don’t just give more accurate instructions.

I’m still learning, still working it out, but at least I now know that the reason I get things wrong is because imprecise instructions that assume I have a level of social knowledge that I don’t have are really confusing to me. As I start to remember these seemingly innocuous and isolated incidents they’re linking up to form a consistent pattern of things that I misunderstood, or didn’t pick up on. I’m a fast learner, so I keep learning, and I copy copy copy other people who seem to know what to do, but I don’t have the inbuilt social knowledge that other people have.

The social games that so many people seem so fond of are totally lost on me. However hard I try to learn how they work, I always seem to be running along behind all the social people, trying to catch up, trying to figure it out!

But the whole thing is a massive effort, and a whole load of trying to guess what exactly I’m supposed to be doing!

Too Loud

53-2016-12-29-22-14-42I sat in the masterclass, trying to hear what the teacher was saying to the student, straining my ears against the noise coming from my left. A woman who was sitting a couple of seats away from me was taking notes – with a pencil, and the sound of it scratching on the paper was getting so loud that I could almost hear it drowning out the voice of the teacher. I glanced round the room to see whether anyone else had noticed, but if they had they were giving no indication that they were the slightest bit worried by it.

I’ve noticed that since I’ve been in burnout my sensitivity to noise has increased dramatically and my ability to filter out extraneous sounds has declined substantially. I’ve always had issues with background noise, and usually I’m working really hard to filter out the things that I want to hear from those I don’t – this takes a huge amount of energy and I can only usually do it for a finite amount of time before some sort of meltdown occurs.

Interestingly, the noise in the eating place last summer (see The Discovery) was one of the main contributing factors to my eventually being identified as autistic. Not being able to cope with the noises of food, plates, eating, talking and so on AND then having to eat my own food was one of the big triggers that made me seriously anxious and I ended up figuring that it was so stressful being in that environment that the best thing to do would be just to give up eating while I was there because the whole food experience had become so very difficult. Of course, that wasn’t a great strategy, and explaining my difficulties and being given dispensation to eat somewhere quieter was a rather more realistic approach!

Eating noises in particular are something I find very hard to cope with and, as I’ve seen memes on the internet, I’ve gathered that there’s a name for this – misophonia – which is apparently something else not really recognised by medics. So I have a double problem – I can’t cope with quiet eating situations because the individual noises are too stressing, but I can’t really cope with noisy ones too well either. Catch 22. Maybe I should just accept that communal eating is a jolly unpleasant experience and stay away from it completely? Or maybe a more sensible solution might be to limit it and be aware that it takes extra energy!

But it’s not just eating. We don’t have a separate kitchen at home, just an area at one end of the sitting room. When my husband is cooking, particularly if he’s frying anything, the sound of the stuff in the pan can sometimes quite literally hurt my ears. I also get similar problems with cutlery clanking on plates, or pots and pans being rattled and so on. Even when there’s no cooking going on, I sit there waiting for the fridge to stop making a noise so I can get some peace. I really would be the world’s worst kitchen worker!

Usually I manage to cope with most of the noises in the everyday world. Like bright lights, they exhaust me and I need to recover from them. Like with light I’m trying to figure out a way to dull them somewhat, especially now I know that I’m not hearing the same things that other people hear (not because there’s anything wrong with my ears, but because the way my brain processes sounds is rather different). Unlike with light it’s more difficult. Wearing sunglasses is an easy adaption – I’ve worn glasses since I was a teenager and have to wear them anyway to be legal to drive the car and to be able to see. Glasses are no big deal.

Earplugs or headphones are an entirely different matter. I can tolerate having earphones in for a short while, but I’m permanently slightly uncomfortable with them in because of how they feel in my ears. Apparently there are people who can sleep with earplugs in – I don’t know how because they drive me nuts after a very short time. I have worn earplugs at airshows and so on, but the sound of my own voice is then totally unbearable and I only keep them in for the noisiest jets. I would also feel very vulnerable out alone without being able to hear what’s going on around me, because I use my hearing so much as a safety mechanism – maybe the advantage of hearing so much of the background noise upfront is that I notice things like footsteps behind me or the whistle of wind in bicycle wheels when I’m about to cross a road, or similar. I haven’t yet solved the noise problem – that’s very much a work in progress!

And, of course, sound has the additional problem over sight in that it isn’t just the filtering of noise that’s the issue, but a lot of the time coping with sound requires the auditory processing of language too. It has now become obvious that spoken language doesn’t come naturally to me and filtering out conversations from other conversations is something I’ve always found really hard work – which is why I’ve often found myself at parties following a conversation that I’m not even part of and when I’m then asked to contribute have had to ask what has just been said as if my hearing was a bit dodgy!

I’m fairly confident that when I’m recovered from the current burnout things will get a bit better. During most of my life I’ve generally preferred having music playing to having silence – music is a huge and very important part of my life. Interestingly, sometimes, background music (as long as it isn’t too loud) can be a steadying influence on me when I’m surrounded by talking and conversation. It feels to me as though it enters my head on a different channel from conversation – it goes straight in and has meaning instantly without the translation mechanism needed for words. However, when I had the 2001 burnout I couldn’t cope with music at all and craved total silence most of the time. This time around it hasn’t been quite as bad, but all my volume controls have been turned right down and I need everything very soft. On bad days I can’t watch the television with sound and simply put the subtitles on and read them instead. I have managed to play in the occasional concert and the music itself hasn’t been too bad, but the applause at the end of the show is very very painful at the moment. Again, I’m hoping this will improve.

Of course, living in a flat with 3 lots of neighbours is really not ideal in this situation. And the fact that I’m only getting out about once a week means I’m spending an awful lot of time listening to the neighbours’ doors squeaking, their showers running, the noise they make in the corridor outside, the car alarms in the car park below, the dogs barking, and worst of all, the noise of the primary school kids arriving in the morning (the primary school is very close to our block of flats). The voices of babies and small children produce the same effect that knives clanking on plates or people chewing or pencils scratching on paper do. I’m guessing it’s something to do with the frequency of the sound or the structure of the wave or some similar thing – maybe I’ll research it one day, but for now it’s just simple observation.

And, like everything else, now I know how much energy I’m using to cope with filtering noise and trying to focus in on what I actually need to hear, I’m going to have to adapt things a bit. More recovery, more time spent in silence (or the closest I can get to it, given my living circumstances), more time on my own. We’ve also discovered how to disable the entryphone to our flat (nobody ever visits unscheduled anyway) and we now have all ringers on phones permanently turned off. Social occasions will have to be prepared for, recovered from, and rationed to things I really want to do. Having to cope with the sheer amount of noise in the world is yet another thing that drains my energy and causes exhaustion, overload, and sometimes meltdown.

Too Bright

52-2016-12-25-22-53-15I have just changed the lighting in our sitting room – again. I’ve unscrewed yet another bulb from one of the main lights (which are made up of five stalks, each with a bulb on the end), turned the other main light off completely, and installed a lamp with a low wattage bulb instead.

A few weeks ago I stopped using the main lights in the bedroom and installed a lamp in there with another fairly dim bulb. I now only turn the main lights on when I really need to see anything. I also turned the brightness on my computer screen right down to the minimum, and even so can only manage to spend about an hour at a time working at the computer before I start to feel quite ill and need a significant break.

I have become seriously sensitive to light in the last few months, or, more accurately, I have become properly aware in the last few months, of just how seriously light affects my health.

I’ve always known that light levels mattered to me much more than they seem to to a lot of people. When I’ve been very depressed in winter I’ve been greatly assisted by both a lightbox and a “daylight” alarm clock. I also struggle, during the long days of summer, to get to sleep at night or to stay asleep past dawn if I don’t have complete blackout curtains. I even bought a special curtain rail that fits close to the wall so that not the slightest sliver of light can be seen once the curtains are closed. It has to be dark, really really dark.

My sensitivity to light is also, I have discovered, a large part of my inability to cope with shopping. Shops tend to be brightly lit places, with lots of fluorescent bulbs. I have recently been experimenting with wearing dark sunglasses in supermarkets and have found they help significantly with the nausea and exhaustion that I always assumed was part of the normal shopping experience.

Considering light sensitivity has also solved another mystery. Around 3 years ago we had to move to a rather small flat, and most of our possessions are currently in a storage unit some 20 miles away from home. They need sorting very badly, as they were packed in great haste and many are unlabelled. I’ve had several attempts over the years at going to the unit, unpacking a few boxes, and starting to sort through their contents. After around 20 minutes I become so tired I cannot stand, and not long afterwards I start to feel desperately sick and in a state of collapse. This has always puzzled me. I’m a strong, relatively fit person with a great deal of physical stamina (I run ultramarathons for a hobby), yet just unpacking a couple of boxes finishes me off. This has never made any sense.

Until, a couple of months ago, I considered the lighting in the storage facility. Which is similar to the sort of lighting in supermarkets, but even brighter and more intense. Unshaded and glaringly bright industrial strip lighting. And suddenly a mystery that has puzzled me for nearly three years was solved – the reason I cannot work in the storage unit is that the lighting in there quite literally makes me sick.

Obviously, we now have a problem to deal with – I have to be able to sort the stuff, throw what we don’t need, repack tidily the things we want to store until the time we can move somewhere a bit bigger, and rescue things that are precious and needed and bring them to the flat. But at least we now know what the problem is, so we can work on solving it.

My sensitivity to light also explains a couple of mysteries from my past.

When I was a teenager and first needed to wear glasses I thought that getting photochromic lenses would be pretty cool, and also really useful because I wouldn’t need to have a separate pair of sunglasses. Because my stepfather was an optician, he gave me my glasses as a present for many years, and I always had photochromic lenses because I discovered I really really liked them. However, by the time I was in my late 20s I’d moved away, things had changed, and I started to buy my own glasses. Because I was struggling for money, owing to being unable to keep any sort of job for very long, I simply started to buy the cheapest glasses, the ones with plain untinted lenses. My energy levels decreased significantly at around the same time, although it’s only with the benefit of hindsight and new knowledge that I’ve connected the two events, but now that I have, it’s rather obvious.

During the latter stages of the 2001 episode of burnout, I started to realise that I was going to end up in a rather serious situation with rent and food and so on as it became obvious that I was going to lose my job. I didn’t have the first clue what to do about this, so thought I would try to get to the nearest branch of the Citizens Advice Bureau in the hope that someone might be able to help me. I remember walking down the street, near where I lived in north London, and as I walked the light got brighter and brighter and brighter. Eventually it became so painful and so overwhelming that I collapsed onto the pavement. People rushed over to help me. And I eventually sat up, managed to rest for a while, and got to the CAB, who were no help at all.

The mystery about this episode was that as I came round I looked to see how other people were reacting to this sudden painful intrusion of brightness into their lives. And, oddly, none of them seemed to have noticed at all. They were just carrying on with their lives. The mystery of why these people hadn’t all collapsed in the street as I had was another that was only solved in the last few months, when I started to read about autism and sensory processing disorder.

So, discovering I am autistic has explained yet more mysteries from my past, and given me the information I need to work on solving problems in the future. I suspect some of the exhaustion I’ve felt when going home from jobs in brightly lit offices and classrooms has also been down to light, and if I ever do get well enough to work again then suitable lighting might be the sort of adjustment I’d need in order to stay in a job.

As far as we are able, we’re sorting the lighting out in the flat. Being able to just have gentle natural light would be lovely, but much of our flat is entirely internal, without windows, so we have to make the best use we can of the gentlest lighting we can cope with while also leaving the option for something brighter when we need it to see properly.

And I now have sunglasses, in my prescription, in two levels of tint, medium and dark. Wearing them out in the world is definitely helping me to cope. I wish I’d known years ago that something as simple as wearing sunglasses regularly would improve my life so significantly.

But I do now know. And this is why, although discovering I am autistic means I know I will never “get better” and I need to rethink my ambitions for the future, it also means that I can start to do things, such as altering lighting and wearing sunglasses, that will improve my quality of life on a daily basis. I can stop wasting energy trying to cope with unnecessary exhausting visual input and use that energy to feel healthier, or to achieve a little more, or even a bit of both!

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!

The Pea Factory

41-2016-12-20-17-00-59I wrote this back in late September when the whole idea of my being autistic was still very new and I was still exploring what autism was all about. At that time I didn’t have the faintest notion of “visual stimming” (although, of course, I did, because I’d been unknowingly doing it all my life – I just didn’t know what it was called), and I was only just learning that there were things that autistic people particularly tended to enjoy doing and watching – and not only enjoy (because many people enjoy the same things), but find totally compelling, and enjoy not just for a short while, but for hours and hours on end.

***

27 years ago I was a first year undergraduate in Oxford. I had this friend on the next staircase who had this thing that we called “the pea factory”. It was a bit like an egg timer, but instead of sand it had liquid and little balls of green liquid would come out of the top and hit a succession of small ramps and then end up at the bottom. When it was done you turned it over and it did the same thing again.

I spent many many hours with the pea factory. While people chatted, dropped by my friend’s room for coffee, ate toast and chocolate, and nattered about college life, I would sit on the window seat and turn the pea factory over time and time again and watch the little green blobs make their way down the ramp. I loved it. Sometimes it was just my friend and me, and we’d watch the pea factory together and chat quietly, late into the night, while the little green blobs kept on going.

Last night I was on Amazon. As part of this whole process of discovery I’ve been getting hold of books, so was typing “autism” into the search bar. It suggested “autism aids” to me, so I followed it to see what such things might be. And there, half way down the first page, was a modern version of the pea factory. Blue and yellow instead of green and white, but essentially the same thing. And they were selling these things as calming aids for autistic people!!!!

And I almost fell off the sofa as the memories of sitting calmly watching the pea factory in my friend’s room came flooding back. I’m going right through my whole life at the moment and keep coming across so many things like this. I’m trying really hard to just gather evidence to help with the assessment, whenever it will be, and not to fall into some sort of trap of retrofitting everything to an autistic profile, but there are so many things that are making me think and remember.

Maybe there was a reason I loved the pea factory? Maybe whatever soothes autistic people who buy these things on Amazon was the same thing at work in my friend’s room 27 years ago?

And maybe the most extraordinary bit of this story is the identity of the friend who owned the original pea factory…

He’s been my husband for the last 14 years!