Very Very Tired

Imagine…

You ran a marathon yesterday
Or had a big meeting at work
Or took a difficult exam
Or moved house
Or finished a huge assignment
Or travelled a long long way
Or dealt with a family emergency
Or been to a large all night party

Or something else similar…

These are big things.

You might expect
To be
Very
Very
Tired.

And today you would need to rest.

In my autistic world
I know that if…

I went out of my flat yesterday
Or spoke to several people
Or had to sit still for a while
Or encountered harsh lighting
Or chatted for a few hours
Or had to wear particular clothes
Or sent a few e-mails
Or gone for lunch with friends

Or something else similar…

These would be big things.

I would expect
To be
Very
Very
Tired.

And today I would need to rest.

For years
People have asked me
“Why are you so tired?”
“What have you been doing?”

Until I knew I was autistic
I could only say
“I don’t know.”
“I don’t understand.”

I was just as baffled
As everyone else!

I know now
That
For me
As an autistic person

The cause of this
Utter
Debilitating
Exhaustion

Is simply
Existing.

Existing in a world
Where people communicate
Constantly
By talking.
Instinctive to many
But an effort for me.

Existing in a world
Where the input to my brain
From my senses
Is massive
And overloads my system
Until I can no longer cope.

Existing in a world
Where people sit on chairs
And care about appearances
And follow secret rules
That nobody told me.

It takes a lot of effort!

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 Feely

59-2016-12-15-10-49-11Just last week, in my facebook memories, there appeared a status from a year ago. My husband and I had been having a conversation, prompted by something we’d seen on the TV, about how well we slept. I had said at the time that having a husband who pulled the bedsheets and altered their tension or made wrinkles in them was definitely detrimental to good sleeping.

A year ago I didn’t have the first clue I was autistic. I had never heard of sensory processing disorder or any of these sensory sensitivity issues. But I knew, absolutely knew, that one wrinkle in a bed sheet was a disaster! Always had been. Bed sheets should be flat and smooth, with even tension throughout. Anything else was bad. I’ve always been a bit “princess and the pea”ish about where I’ve slept, arranging things so I can’t feel wrinkles, and making sure nothing felt “wrong”!

And it’s not just about bedclothes. Right back to my childhood I remember things that made me very very uncomfortable. I grew up in the 1970s, when polo necked jumpers were very popular – I remember pulling at the necks, trying to make them bigger and looser to stop the feeling that I was being strangled. It was even worse when they were made out of wool and to add to the strangled feeling there was this tearing cutting feeling everywhere it touched my skin, as though I’d fallen into a bramble bush or something. I remember being desperate to have a pair of jeans because they were fashionable, but then feeling utterly terrible when I tried to wear them (this was before lycra and stretch made such things wearable) and they felt like they were cutting me in half at the waist.

I also remember, as a child, being in a school play and having to wear make-up as part of my costume. The teacher put lipstick on me and instantly it felt absolutely horrible. Totally disgusting. I told the teacher this and she told me that I’d understand when I grew up and that grown up women loved lipstick and wore it every day. I had a brief flirtation with the stuff in my teens, but it still felt, and smelled, and tasted, absolutely vile. I think I wore foundation twice, before chucking it in the bin because it made me desperate to wash my face because I felt so horrible and dirty and it smelled so bad. I’m 45 now, and I still haven’t become that grown up woman that the teacher told me I would, and now I know that I never will, and the teacher was wrong.

Another of the “grown up woman” things that I ditched in my 20s was the bra. I can bear to wear a wide strapped sports one for the duration of a run, but while I’m actually running only. If I try to drive home after a race or training run still wearing it then I start to feel sick, the cutting pressure across my back, the feeling of the straps digging in, like someone’s trying to slice my skin open. I haven’t worn a bra in daily life for over 20 years, and I never shall again.

The same is true of anything made out of lace. I developed a certain tolerance as I grew up and things did improve as fabrics became better, but still, when I buy an item of clothing, I FEEL it. I will choose the thing that feels good over the thing that LOOKS good EVERY TIME! I also spend time every morning when I put on my socks, lining up the toe seams so they are symmetrical and perfect. I know there are some people with sensory issues who don’t like to wear socks at all – I am not one of them – the feeling of bare feet on the soles of shoes and sandals is not pleasant for me – I would rather wear socks. I am a person who wears socks with sandals, and I don’t care how many stupid memes tell me it is unfashionable – it is comfortable, and that is way more important.

I also mentioned, in The Discovery, how I cut the labels out of my clothes. I don’t know why people put labels into clothes, but every time I buy something new I take it out of the bag and go over it and remove the labels. I assumed that everyone did this, since it is such a routine and normal part of my life and has been for as long as I can remember. I then wash it before I wear it because the stiffness of anything that is likely to touch my skin is horrible. I don’t like the scratchy feeling or the way new clothes smell. I am a person who exists most happily in old t-shirts, elasticated-waist jogging bottoms, and fleeces. I can dress up smartly for an evening, and sometimes do, but it is always temporary, and the posh clothes are off the instant I’m back in the door.

I have spent years wondering how people can go to work all day in a dress, with tights, and high heels. I have marvelled at how they endure the pain of wearing a bra day in day out. I have been overwhelmed by their toughness, their resilience, and their fortitude in the face of what must be so devastatingly painful, and I have long known that I could never be like that. I had a job once that required me to wear a suit. I lasted a month. Just getting dressed for work each morning was so traumatic that I was in tears every day before I even left the house. I eventually went off sick from that job and never returned to it.

In the same way that I have to remove labels from clothes, I also feel a need to remove stickers from books. If I’m reading a book and it has a barcode sticker with an ISBN number on the back and I can feel the raised sticker as I hold the book it distracts me from what I’m reading to the extent that I don’t take the information in. Just as with clothes, I get home from a bookshop and remove anything that might interfere with the smooth surface. Where other people might not notice, I do.

And I was astounded to read, in one of the many books I’ve been reading on autism, about the autistic woman who, when kissed by anyone who left a slightly damp patch on her cheek, instantly felt the need to wipe her face. I am exactly the same. There feels something so terribly wrong, like the surface has been disturbed, and I need to straighten it, to stop the feeling of blemish, of cold and wet.

I am also sensitive to what is on my fingers, and, for many years, have washed my hands in such a way that I thought I had some sort of obsessive washing tendencies, but I realise now that the cause of my handwashing antics is actually to do with sensory issues. I cannot BEAR to have sticky or greasy fingers. Given the option I will eat cakes or pastries with a fork to avoid touching them with my hands, and this isn’t, as I’d wondered, a germ-related thing, but the dislike of feeling sticky or dirty. If you see me eat a bag of crisps then I will most likely wipe my hands on my trousers after every single crisp. If I’m in a place where I can, I’ll also get up and wash my hands afterwards. If I’m out, then I will do everything I can to eat a cake from the packet without touching the cake – I’m quite skilful at it. And when I’m in a position when I can’t do any of these things, it uses extra energy, extra resources, and makes me more tired, more likely to go in the direction of meltdown, and so on. I’ve long marvelled at people who seem so unfazed by eating with their hands, or by people who seem, so effortlessly, to put their hands into mixing bowls when baking, or who think gardening is therapeutic, yet it involves touching soil, which is, for me, a very unpleasant sensation.

I’m the same with crockery and cutlery. My husband is quite used to me sending mugs or knives or forks back because they “feel wrong”. He doesn’t have the same sensory issues that I do (if anything, he is undersensitive to such things), but he will wash them again and again, to make them right. I have, on occasion, been home alone and “my mug” has been greasy in the sink and I have spent all day without a cup of tea as a result. This is what happens on my worst days. On days when I have more energy I will steel myself to wash the mug, and then wash my hands afterwards until they’re back to how they should be, and how they feel right.

It’s a constant balancing act, but what’s so extraordinary is that these things have all been part of my life for decades and I’ve never had the faintest idea why.

Until I started reading books about autism and sensory issues!

Bingo!

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!

Accepting Wrong

51-2017-01-05-23-23-12Sometimes I feel wrong.
And I don’t know how.
Just wrong.

It is not always easy to tell
What I need to do
To feel better.

I try moving and stimming,
Lights and soft fabrics,
But still wrong.

I look at my weighted blanket
And my compression clothes.
My skin recoils.

Maybe I’m hungry and need food?
So I go to the fridge,
And feel ill.

I probably need a meltdown.
I’m probably anxious.
Maybe.

Upcoming social events,
Assignments and commitments,
Already pressing.

Ongoing situation with assessment.
Still constantly flashing in my head.
Tough times.

Pushing myself in recent days.
All takes its toll.
Uses energy.

I listen to my body and ask what to do.
It just says it feels wrong.
No more detail.

There are feelings of something
But impossible to know
What they are.

Sometimes I feel wrong.
And there is nothing to do.
But live with it.

And wait…

***

About half an hour after I wrote those words I heard a bit of a kerfuffle going on in one of the rat cages. I went to see what was going on and opened my mouth to say “Hey dudes, what’s doing?” or similar, as I would usually do.

The words were gone. Completely. No possibility of producing comprehensible speech.

Fortunately rats don’t care about words. They respond to any sounds.

But I discovered what the wrong feeling was.

Impending loss of words.

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!

Head’s Office

09-2016-12-15-16-03-53I was in trouble. Yet again I was in the Headmaster’s office. I can’t remember what I’d done, but it must have been something pretty bad because I was fairly certain I would be caned.

My misdemeanours usually came in two forms. The first – violent outbursts, hitting out, swearing, getting into altercations with other children. The second – failure to complete work, to present work sufficiently neatly, to do what I was supposed to be doing. I don’t know what I’d done on this particular occasion, but after weeks on report I was fairly certain I’d reached the end of the line and I stood there in my grey uniform with the chewed tie, waiting for the worst.

The Headmaster started to question me, which I found confusing. He asked me whether I had breakfast at home and what I’d had to eat this morning. I always had breakfast – my parents wouldn’t allow me to go to school without it – and it would have been cereal and toast, because it was always cereal and toast on a school morning. I told him this. He then went on to ask if I had my own bedroom at home. I told him I did. And he asked me what time I went to bed. I can’t remember what time it was, but I told him my bedtime, which was the same every night, and his response, which I can still hear in my head, was “That’s good and early.”

Then he started to question me about my parents. Were they good to me? I said they were OK, though they always made me go to bed earlier than I wanted. Did they ever hit me? I told him that they didn’t, but when I’d been naughty they lectured me on why what I’d done was naughty. Did they ever do anything that made me uncomfortable? I couldn’t think of anything. Did they ever touch me anywhere that felt wrong? I assured him that they didn’t.

I can’t remember much more than that (it was over 36 years ago after all), but I remember answering these slightly odd questions, wondering why he was asking me all these strange things and not just getting on with the caning thing. I remember eyeing the cane in the corner of the room, wondering whether it would hurt more or less than the ruler that another teacher had recently hit me with as a punishment for untidy work. I remember wondering how the cane worked and whether it would be on my hand, like the ruler had been, my bare legs, or through my skirt on my bottom.

I never found out. The caning never came. The Headmaster looked at me and said to me, very very seriously, that if there was anything, anything at all, that upset me at home, that I should come and tell him. And that it would be OK. And I could tell him anything. I was still very confused about this, because I couldn’t think of anything that I needed to tell him apart from some stuff about having to eat vegetables and I didn’t think he’d be interested in that. I assured him that I would tell him the minute anything bad happened. With this assurance, he dismissed me from his office and sent me back to the classroom.

I have never forgotten this incident. All my life I’ve known that I was very very naughty at primary school, constantly on report, and that I sailed so close to the wind that I was nearly caned and had this bizarre interview about my home circumstances. I put the naughtiness down to boredom, to being bullied, and to the general wilfulness that characterised my early school career. I realised that the Headmaster knew that there was something not quite right and, as I grew into adulthood, it became apparent to me that he was trying to discover the cause of my behaviour and was investigating the possibility that I was being neglected or abused at home.

But he never caned me. And he never did get to the bottom of my extreme behaviour or my problems in the classroom. But he tried. And he recognised that I was in considerable distress and knew that there was something going on. And, to his credit, he did his best to find out what.

At the end of the 1970s, an ordinary primary school headmaster in the north of England would never have guessed that the usually chatty wilful little girl who did well at tests, but whose behaviour was often challenging, was autistic. He’d never have known that she was constantly overloaded by the noise of small children surrounding her. He’d never have known that she didn’t complete projects because she didn’t really know what to do or how to go about it.

And the irony is that the little girl didn’t know these things either. She wasn’t making much effort to learn sums or spellings while at school because those things came naturally to her, but she was making an absolutely huge effort to try to keep the bullying at bay, to make a few friends, to work out how she was supposed to behave to fit in. She was processing massive amounts of information, building a mask that would cover her condition for decades to come, and working out what she had to do to survive in a confusing world. But she was only a small girl, and she didn’t know any of this. She just assumed it was the same for everybody because that was all she knew.

But now, decades later, she has finally discovered what was going on. And she’s thought of the Headmaster and how he knew there was something, but couldn’t work out what. And he tried, but, like her, he had no chance of finding the answer back then, because girls like her weren’t given labels or support and their difficulties weren’t recognised.

But he never did cane her. For which she was very grateful.

He did, however, make her stand up in assembly a few months later – so the whole school could applaud her for having the highest grade in the school on a musical instrument.

She must have been one of his more confusing and baffling pupils!