Disparate Facts

I’m going to tell you a few facts about me. These things have always been true. They are, on the whole, things that I have always known about myself. For the last 45 years they have been steadily accumulating, and just regarded as my “quirks” by everyone who has known me and known about some or all of these things.

1. I never go to the cinema. Although I went a few times as a child it was never at my initiation and as an adult I’ve hardly ever been. The last time was over a decade ago and we left after the first 20 minutes.

2. I was really naughty at primary school, constantly on headmaster’s report, constantly in trouble for various things, and not really getting any significant work done.

3. I do not know the name of any other person (apart from my husband) in the town where I live. I do not know my neighbours’ names and have never spoken to any of them.

4. I am deeply unfashionable, never wear make-up or a bra, and am utterly unable to comprehend why, say, wearing socks with sandals could be wrong since it’s comfortable and easy.

5. I really like even numbers and most particularly numbers with lots of factors. I like square numbers, and I believe numbers have a sort of hierarchy where some are more relaxing than others.

6. I scratch my head a lot and pick the skin off my scalp. In my 20s I did so very very badly and had open wounds on the back of my head. I didn’t know why I did this, it was just a thing I did.

7. If I spent 20 minutes or so in our storage unit I start to feel very very exhausted and sick. I have to sit down and I then deteriorate to the point where I have to go outside.

8. Sometimes I go really really quiet and just stop talking. It usually happens when I’m really exhausted or really stressed or I’ve just become really angry about something.

9. I cannot tell the time easily from a traditional clock face. Neither am I very good at telling left from right without thinking about it really hard and making writing movements with my fingers.

10. I was bullied all the way through school, even at secondary school where I wasn’t regarded as naughty any more, but as a bit of a geeky strange kid.

11. I’m a really rubbish cook. Before I was married I lived mainly on takeaways and toast, and I often forget to eat and have very little idea of how hungry I might be.

12. I sometimes get really really stressed and angry at everything in a really really short space of time and need to run away or hurt myself and I have absolutely no control over it.

13. I have never been able to keep a job for a sustained period of time and most of the jobs I’ve had I’ve left with some sort of mysterious mental illness, usually given as depression.

14. Left to my own devices I take my shoes off and sit with my legs crossed like in primary school assembly, or sometimes with them folded underneath me.

15. I get really stressed when I’m near the fridges in supermarkets. I usually leave my husband to do all the fresh food shopping and spend my time sniffing every single sort of fabric conditioner.

16. I have never had, or wanted, a satnav machine. I love looking at maps and if I have to go somewhere I don’t know then I look it up in advance and memorise the map.

17. If I am going to do an exam and I agree to meet up with people in the pub afterwards I will be much much more nervous about the pub than I am about doing the exam.

18. When I start a new hobby (or resume an old one) I take it very very seriously. I buy loads of books and research it online and often work on it late into the night.

19. My legs jiggle almost constantly if I don’t consciously try to stop them. I cannot sit still and have been known as a fidgety person all my life.

20. I will automatically assume, once I’ve finished writing this blog post, that you’ve already read it, even though I haven’t posted it yet! I will have to keep reminding myself that this isn’t the case!

If I had listed these facts a year ago I would have seen no connection between them whatsoever – they would just have seemed like a list of random unrelated facts. In fact, I would never have even contemplated making such a list – why on Earth would I have connected my inability to cook, with my avoidance of the cinema? or my behaviour at primary school, with the fact that I have never owned a satnav? or getting exhausted at the storage unit, with resisting fashion trends and not wearing make up? Thinking about these these things there seems to be very little connection, if any at all, between many of them.

Until you start playing “autism bingo”!!! I should imagine that, if I gave this list to a group of autistic people, many of them would look at it and say “Yes, me too, me too” or something similar. Obviously, not every single thing would apply to every single person (everybody’s different after all), but the minute I started researching autistic traits and examining my life, the above list of apparently disparate facts suddenly links up and makes perfect sense. It seems that I wasn’t really “quirky” in the way that I thought – these are all just standard manifestations of autistic characteristics!

I’m fairly certain that I will discover many more things that could be added to the list above as I continue to examine my life from an autistic perspective.

It really is about understanding.

Limit Exceeded

Two days
Out in the world.

Drinks in a pub.
Walking,
Talking,
To three other people.
Some difficult subject matter.
Decisions to be made.
Negotiating.
Head already overloaded.
Working so very very hard.

A meal out,
Eating,
While talking,
With noise,
And people.
More difficult stuff.
I managed half
My food.
Achievement.

Then home.

A stimmy evening,
Unsettled.
Sleep
A long time
Coming.
Wakefulness
Followed
Quickly.

Then up again,
Dressed again.
Coffee and a snack.
More noise
More conversation.
Lots and lots of voices
Trying to filter out
The necessary bits
And to describe
And explain.
Eating again too.

A shop.
My legs starting to tire.
The lights brightening.
A walk.
And, already overloaded,
Unable to cope
Unable to explain.
Needed neutral
Or gentle
Non confrontational,
Or silence.
Didn’t get it.
Head overboiled…

Meltdown.

Unstoppable
Inevitable
Out of my control
Fuse tripped
Bottom fell out
Of
My spoon drawer…

Trying not to bash my head
Against a stone wall.
Desperate to damage
To replace the pain
In my head
With easier pain,
To make the wrong feelings
Right again.

Collapsed on the pavement.

Pulling my hair
Tearing at my leg
Simultaneously
Regretting and glad of
Short fingernails.

Wishing I had never
Been born.

The sun
Dazzling
Through dark glasses.
Bright bright bright.

Distant voices.
Phone call.

Another universe
There are people there
But they are outside
My head.

I understand the words
But am unable to respond.

Words gone.
Connection severed.

I head for my car,
Safe space.
Mine.
Closest there is
To home.

Trying to sort
With others
By typing on phone.
It wasn’t supposed
To end like this.
I was supposed
To be stronger.

Driving home
Waves of nausea

The last emergency spoon
Used.

Sofa.
Blanket.
Darkness.
Silence.
Everything
Hurts.
Ears ringing.
Head in pain.
Body aches.

My husband messages.
He comes home
Early
To care for me.
I eat a few crisps
For dinner.

Eventually,
Exhausted,
I sleep.

I wake, tearful,
Wishing I was no longer alive.

Finally I get out of bed
At three in the afternoon.

After an hour and a half
I manage to get
A glass of water…

I know I should eat.
I don’t want to.
But I eat soft white cheese
With a spoon.

And recovery begins.

This is why
I have not blogged
For a few days.

Life is not
Easy.

Please Communicate…

65-2016-12-29-12-40-19Just looking at the title of this blog post is enough to raise my heart rate. I chose the words deliberately, even though they, and many variants thereof, are triggering for me. As I type this, just thinking about it is making my legs jiggle wildly, making me want to stop typing so I can chew the ends of my fingers, and making me feel slightly sick.

“Why?” I ask myself. I am a reasonably intelligent person in my mid-40s and I consider myself rational and logical in so many ways, yet when I’m asked to communicate I turn into a petulant child and have to use every ounce of my energy to make myself do what I know I have to do, because somehow it is so very very difficult. When I am well, and have lots of energy it becomes easier. When I know exactly what I need to say or it is something easy and straightforward, it is also easier. But much of the time it is really really difficult and triggers something completely irrational in me. I didn’t realise why until a few months ago.

I was reading an e-mail from my Open University tutor. She’s a lovely tutor, and is being really amazingly good considering how badly my work is currently going, and she’d said she was fine with an extension but since it was over the extension limit I would need to contact student services too…

And there was the trigger. I slammed the iPad down on the sofa and sat and cried for 2 hours.

Unreasonable reaction?

By any ordinary standards, and by the standards of my logical brain, yes, of course it was unreasonable. The woman had asked me to send an e-mail. That was it.

I eventually contacted my husband and told him that the degree was finished. Even if I could eventually get enough brainpower together to do the mathematics, the communication and the form-filling was so way beyond me that I might as well give up.

And then the penny dropped. The trigger wasn’t anything to do with the work or the extension, but with the request, by one person, that I communicate with another. It’s bad when there is just me and another party involved, but becomes exponentially worse when a third party is added, especially if I need to communicate something unknown or not simple.

And we started to look back on incidents throughout my life. I went back to summer 2016, and to sitting on a bench with one of my colleagues from the viola section and saying to her that I needed to cut a rehearsal because I wasn’t feeling well. She said to me that I really should tell the section leader. That remark triggered a meltdown that saw me run away across 2 fields, have an asthma attack sufficiently bad that I had to empty my handbag out onto the grass to get at my inhaler, and meant that I missed lunch and spent several hours crying in my tent.

And I remember back to an occasion when my father-in-law visited our house, not long after we were first married. My late mother-in-law was very fond of writing letters and he suggested that it would be a nice thing for me to do to write to her regularly. I very nearly hit him. I ended up running up the stairs in tears on the landing of the house, screaming about how horrible my life was and how I was so overstretched that I couldn’t possibly imagine being able to write letters. It took several hours of very gentle work by my husband to calm me down.

One post-Christmas time as a child. I always found thank you letters really really difficult, but my parents were very keen for me to do the polite thing and write to the assortment of random folk who sent me postal orders or whatever. One year I’d actually done the letters, without being asked. They were in envelopes, with stamps, ready to post. My mother came into my room and said “Have you done your thank-you letters?” I felt the anxiety rise, I felt the stress, the angry, the bad. She walked out of my room and I took the thank-you letters out of my desk drawer and ripped them into tiny pieces. I’d done it on my own, but the being ASKED to do it had ruined it. The feeling of stress that this was something I’d been told to do was so overwhelming that I couldn’t bring myself to send them.

And all of these things, when I consider them logically, make no sense. They’re simple requests – write a letter, talk to someone, send an e-mail. What on EARTH is so difficult about this? Why do I find these supposedly simple jobs so challenging? Why do requests to communicate send me into meltdown? It’s utterly incomprehensible.

Until I factor in autism. Until I view these incidents (and many more like them) from the perspective of someone who has a condition that is partly defined by problems with social communication. Until I sit here at my desk, looking at my “master” jobs list and see that the jobs that are still to be done are mostly ones saying “E-mail x about y” or “Message so and so” or “Contact somebody about something”. The contact and communication jobs are the ones that fall by the wayside as soon as my energy levels fall and as soon as I start to feel at all unwell.

I can “perform” on this blog, and, to an extent on my facebook wall – I regard both of those, ironically, not as communication in the same sense that sending an e-mail or even a facebook message is. They are the equivalent of standing on a stage giving a presentation. I can do that. The e-mails are the equivalent of sitting around in the pub talking to people individually after the conference is finished for the day. Unless I have a lot of energy to spare, I can’t do that.

My e-mail inbox has always been an issue. I have a limited number of days per week that I have sufficient energy to send e-mails, and they pile up. The jobs left on the jobs list have always been the ones requiring communication. And many many meltdowns have been caused by someone asking me to communicate either with them, or, even worse, with somebody else.

As for the telephone? The ringers on both my telephones have been turned off for months. I only turn them on if I’m expecting something specific (such as I will be next week when the car goes in for its M.O.T. test and the garage will need to contact me for authorising work). The number of nonverbal episodes I’m currently experiencing make the telephone impossible at times in any case. I do still use the phone from time to time, but currently only for well-scripted conversations, or with a very few known people, and at times that I’m feeling particularly strong and capable.

When people first started suggesting to me that I might be autistic and when I started reading about autism, I came across the notion of a “communication disorder” and, at first, dismissed it. I can talk. I can communicate. Me? Communication problems? I was, of course, thinking of more overt communication difficulties, of those who are unable to speak at all. I can speak perfectly competently for much of the time (not all – there’ll be a blog post about that at some point), and so I didn’t instantly think any of this applied to me.

Until I started to investigate, to find out what was going on under the surface, to discover just how much energy sending a simple e-mail takes, to observe the leftover items on my jobs list, to think about how many people I’ve lost touch with over the years because I haven’t communicated with them, to observe how easily a meltdown can be triggered by someone asking me to communicate with someone else or pressuring me to communicate with them.

And I asked myself why a logical sensible grown-up person like me should react quite so badly to all this stuff. Why am I so exhausted by sending a few e-mails? Why am I sitting here now feeling angry and triggered and upset even by my own blog post?

And I realise that it is because I find communicating with other people so very very difficult.

Be Prepared!

45-2017-01-04-16-45-19Baden-Powell had it right. The motto that I learnt as a Girl Guide in my youth, and which the Boy Scouts also used, was spot on as far as surviving life as an autistic person is concerned. Preparation is key. Planning is key. Unexpectedness causes panic, anxiety, and, as it did for me yesterday, meltdown.

I thought I’d done something fun and nice and innocent. I shared a short video on my Facebook timeline, showing a recipe for a pudding made from biscuits, chocolate, and marshmallows. I thought it was a bit of fun, I liked the way the marshmallows melted in the oven, and that people might enjoy watching it. I didn’t expect any negative comments beyond “So sad I’m on a diet at the moment” or “Don’t let my kids see that – they’ll want one”.

Then I got up (I’d posted the video from my phone in bed), went to the immense effort of putting clothes on, thought, since it was already around midday, that I should at least try to get some nutrition into me (I’m having quite a lot of issues with food and often can’t eat at all until the evening when anxiety levels have reached manageable proportions). I went to the fridge and knew that the one thing I might be able to face was some milkshake, and that that would be good because it would provide both hydration and nutrition, and I could take my medication with it. Sorted.

But there was no milkshake. We’d run out. I resisted the temptation to message my husband to tell him because he’s on the very edge of coping – working all hours, fixing the washing machine, providing massive amounts of care. When he fails (to get enough milkshake) it’s not because he isn’t trying his best but because he has simply run out of energy.

So, by now it was early afternoon. I still couldn’t eat. I looked at the mug on the kitchen side and tried to work out how I might get tea to be in it, and couldn’t, because my brain couldn’t work out the many complex steps involved. I used the only energy I had to get a glass and fill it with water, because my brain told me that if I couldn’t get nourishment I should at least try not to dehydrate. In the absence of milkshake, water was the best I could do.

Then I went back to the sofa and opened up Facebook. There were comments on the video. Not good ones. Along the lines of “It’ll give you a heart attack”, “It’ll give you diabetes”, and, simply, “Yuk”.

When I saw the word “yuk” I burst into tears. How could I have got it so wrong? I shared something that I thought was so innocent, and all I get is stuff about horrible illnesses and yuk. I obviously fucked up big time. This is what I made people think of. Great. Nice one me.

I tried to reply about what a screw up I’d made, but could hardly type because I was shaking so badly and could hardly see through the tears. I really was wrong. A socially inept pariah. I would have to give up social media too. Evidently now the mask had disintegrated and I was starting to be my full autistic self I was losing any rational ability to see what was good. My judgement was screwed.

Socialising outside the flat is already limited because of the sensory overload. It was evident in that moment that socialising online was also falling to pieces. My life was heading for a simple “get up, stare at telly and play solitaire, try not to kill self, go back to bed”. Forget people. I clearly didn’t understand them. They clearly don’t understand me.

I already strictly limit what I post on Facebook. I have extremely strong political views, which anyone who knows me will know. I very rarely post about them – not because they aren’t passionate and strong, but because I know my mental health is too fragile to cope with the inevitable debate it would create. I have to limit the amount of news I currently take in for similar reasons. It’s not that I don’t care, but that I can’t cope. And by “can’t cope” I don’t mean “makes me cry and feel uncomfortable” I mean “would tip the balance between thinking that I want to be dead and taking active steps to be so”. So I avoid the triggers, because it is the only way I will get well enough to lead any life beyond staring at the telly.

I also avoid a lot of animal cruelty stuff, for similar reasons and because I know it upsets people. I go out of my way to be uncontroversial. When I see posts that upset me or of things I don’t like or can’t cope with, 99% of the time I simply hide them from my feed. Even if someone posts a picture of their dinner and it looks perfectly vile, I just hide it, as I do with other things that I know most people find harmless, but trigger a deep and upsetting emotional reaction in me. If I compiled a set of specific “trigger warnings” for me, it would probably surprise the hell out of people – some things that trigger bad feelings in me are, in most people’s eyes, absolutely normal, yet other things that many people consider triggering don’t bother me in the slightest. I know that my brain doesn’t work the same as other people’s do. I got that years ago. I didn’t need to know about autism to get that – it was obvious as soon as I knew I was a person at all.

So I’d posted a video of a pudding, and got this massive negative reaction. My brain immediately challenged the assertion that eating such a thing would “give a heart attack” because all available evidence suggests that people eat puddings every day without suffering myocardial infarctions and I don’t go into restaurants and see defibrillator machines being wheeled out with the dessert trolley. This was clearly some sort of “small talk banter” that is factually inaccurate but that I know people engage in. Ditto the diabetes claim, which irritates me every time I see it on a post of sweet food but the same people don’t post similar comments on other carbohydrates. Nobody ever comments on how much the slice of toast is raising my blood glucose, on how much the obesity you get from eating too much of anything and doing too little activity to burn it off is the contributing factor that can lead to diabetes in some people. Both the heart attack and the diabetes comments come from a general healthy eating thing and not too much sugar (or whatever is the health fashion at the time) but this ignoring the real facts to make some kind of “soundbite” is part of the world of small talk that drives me crazy.

I’m simplifying massively here. I’m not a medic and I know there are papers galore on this stuff written by people who’ve done the studies. But these glib assertions I see irritate the hell out of me every time. I’ve learnt, over the course of many years that this is what people do. I don’t understand why they do it. But they do. Usually I have enough energy just to like the comment and move on. But yesterday I didn’t. Every scrap of knowledge about heart disease and diabetes from the appropriate branches of my brain flooded my head and overwhelmed me (this is quite normal – one comment like this frequently triggers a huge wave of information release, and information that is not in word form, so I can’t even produce it to debate in real time).

And then I read the one comment that wasn’t about disease. And it simply said “yuk”. And everything along the lines of “if you can’t think of anything nice to say then don’t say anything at all” came flying at me. Why did this person have to be so horrible? Maybe they don’t like chocolate? Or marshmallows? OK. So just move on. Surely? But no, they have to tell me that I’ve shared something horrible, that repulsed them. To make me question my sanity.

At that point I feared a whole slew of comments about this awful awful disease-ridden vile thing I’d shared. I’d clearly got it so so wrong. So I deleted the post. The most I could then manage was a tearful emoji on my wall, and one further comment before my words disappeared. I couldn’t speak. I couldn’t even make enough words to type a coherent sentence. I closed Facebook and sat there wishing I had the means and the energy to end my life.

Then, once the meltdown subsided, I thought “Oh shit, husband might be worried”. So I opened Facebook again and found a message from him – just a question mark. He knows when not to involve unnecessary words. I did the best I could to explain, and to say that there was a whole load of shit broken out on my wall but that I was still almost nonverbal so couldn’t even do anything to explain what had happened. Neither could I even thank those who were being nice, nor enter into the discussion that had started involving cake, and eating issues in general. Fortunately we can communicate without sentences. He knows what I mean, even when the language is only partially formed.

So he did his best to explain, and I’m now doing the full job, via a blog post, because what happened raises one of the things I’ve known all my life. I need to be prepared.

Almost everything I do is planned. If I am going out somewhere then I look it up beforehand. If I need to leave the flat to buy a pint of milk then I prepare for several hours. I have it in my head. When I go and visit my friend I know what will happen. His wife will open the door. We will say hello, I will go upstairs to my friend’s office, sit in the usual chair, and he will just finish the e-mail he’s writing then we will chat. All these normal things are routine. Done before. I prepare for them in my head, but I am fairly certain of the outcome of my actions.

If I am doing something risky or unfamiliar I prepare myself. I know it will be hard. I know there will be unknowns. I know these unknowns are stressful. Therefore I prepare. I put a mental guard up. This is exhausting and takes a lot of energy to do, so I only do it when I have the available energy or when I absolutely need to. So, if someone invites me to, say, play in a new orchestra, I have to factor in the energy of the guard, because I’m going somewhere unfamiliar, meeting new people, and so on. I also have to make new scripts for these occasions, and know that I might even have to improvise conversations and people might ask me questions I haven’t thought of or discuss things unfamiliar to me. So I have the guard. It uses energy. But it protects me.

If I did decide to post something controversial on my Facebook wall I would only do it when I had a lot of energy. I would put my guard up. I would expect negative comments. I would be prepared for debate, and for it to feel rough, and to trigger emotions, and to feel dangerous and scary. I would have already scripted answers to many of the questions I anticipated. I know there are certain people’s timelines that are full of triggers and scary things. Certain groups that I can only cope with sometimes. I only look at them when I have my guard up (sometimes only when my husband is at home with me so we can discuss whether my reaction is correct or not).

I prepare myself. I know that the new thing or the controversial post or the triggering group needs to be approached only when I’m feeling up to dealing with them.

But, when I posted a video of someone making a pudding, I was not prepared. The wholly negative reaction that video produced sliced through my system like an electric shock. I allowed myself to look at the Internet without my guard. As myself. Soft vulnerable bit exposed. Being myself (as people are so fond of telling me to do) means being exposed to hurt and difficulty. Because what is banter to many people is not to me.

This is why being oneself is so hard. Why so many autistics (and also, I suspect, people with anxiety disorders, PTSD and so on) withdraw from social life even, sometimes, when they are lonely. It is a form of self-protection. Because the way our brains are wired means that if we are totally “ourselves” then we expose ourselves to situations that cause distress because many people don’t understand how seriously we can take things that are understood as “social banter” by most people. If we go the alternative route and mask our feelings, saying the “right thing”, and putting our guards up, then we might well appear successful and have “normal” reactions to posts on Facebook and so on, but the cost in energy is huge. And that is why we become so utterly exhausted.

Yesterday, needless to say, was lost. I achieved none of the things I’d hoped to. I managed to eat a piece of toast in the late afternoon and a few chips for supper. No need to worry that I’m getting obese – I’m losing weight at the moment simply because I have so many days when I’m too anxious to eat properly or my autistic brain won’t let me eat anything other than milkshakes or whatever the current “thing” is!

My head now knows though, that posting even something apparently innocent can trigger a meltdown and a mess. Maybe I need to approach even online interactions with more caution. Maybe there are people there who haven’t read any of this blog (I’m fairly terrible at promoting either it, or the page, because I can’t quite believe anyone would actually be interested in any of it) and don’t know just how fragile I am at the moment.

Maybe I need to prepare myself for difficult comments because everyone won’t see a pudding as a nice innocent thing.

This is why the world is so complicated and difficult. Doing anything at all seems to bring a whole load of unpredictable consequences. My brain doesn’t cope well with that. It doesn’t understand. And when it reaches its limit, it goes into meltdown.

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!

Clarification

34-2016-12-29-19-41-46So, my husband returned home last night and filled me in as fully as he could about what he’d learnt from his conversation with the triage service. I’d spent the day feeling pretty rough, and I realised that the blog posts from this week might be rather muddled – I’ve found at least one instance of my using the wrong tense, which is not uncommon when I write! I don’t think in word tenses, but time is positional on the “map” (I’ll call it a map for now, but it’s actually not quite like that) in my head and writing things up using tenses is a matter of translating positions to words. I often don’t get it right first time and usually have to proof-read quite heavily.

Anyway, we are now absolutely confident that the triage service are doing their very best for us and coping with some rather difficult conditions in our county’s adult autism assessment service. I’m not going to go into too much detail, but if I say that the picture of the plants growing through the wall at the start of Too Articulate is an accurate visual metaphor for the attention given to adult autism at this particular hospital, then maybe you’ll understand what I mean.

We have also looked up the relevant NICE (National Institute for Health and Care Excellence) guidelines on diagnosing adults with Autism Spectrum Disorder and have discovered that they say the following:

In all settings, take into account the physical environment in which adults with autism are assessed, supported and cared for, including any factors that may trigger challenging behaviour. If necessary make adjustments or adaptations to the:
• amount of personal space given (at least an arm’s length)
• setting using visual supports (for example, use labels with words or symbols to provide visual cues about expected behaviour)
• colour of walls and furnishings (avoid patterns and use low-arousal colours such as cream)
• lighting (reduce fluorescent lighting, use blackout curtains or advise use of dark glasses or increase natural light)
• noise levels (reduce external sounds or advise use of earplugs or ear defenders).

Where it is not possible to adjust or adapt the environment, consider varying the duration or nature of any assessment or intervention (including taking regular breaks) to limit the negative impact of the environment.

I sit here and think of the environment I experienced at the first appointment, the tiny room, the patterned chairs, the orange chairs, the fluorescent lighting, the loudness of the assessor, and it’s no wonder that, when faced with those conditions, then asked about my childhood (a time I generally try not to think about too much because it wasn’t all that much fun), and my history of nervous breakdowns and suicide attempts, and then told that I was too articulate to be consistent with a diagnosis of an Autism Spectrum Condition, I had a massive meltdown. Every bit of me was stretched to the absolute limit and the fuse blew.

Furthermore, when I was in meltdown the fluorescent lights continued to shine, the woman continued to talk, and there was no opportunity for me to get any peace and quiet to recover.

We are also learning fast. We’ve discovered the difference between a PCT (Primary Care Trust – they ceased to exist in 2013) and a CCG (Clinical Commissioning Group – the modern version), and we are now confident that the problem lies with the CCG. We’re trying to get everything as straight as we can, while also trying to survive (I’m still really not that well and keep losing words and my husband is on the edge of his coping abilities, afraid of the telephone and forcing himself to make complicated difficult telephone calls, and trying to keep his employment stable) and we’re trying to learn about an area that’s pretty much completely new to both of us.

Apparently the idea is that we go to the medics for help, but thus far we’re finding out that it is very much the other way round!

We have also discovered that the advice we were given about going back to the GP and getting a referral to CMHT (Community Mental Health Team) for some non autistic mental health condition would have been an extremely bad idea, because not only would it be unsuitable treatment for me medically, but had I been placed under the care of another team for another condition, I would then have had to wait for discharge from that team in order to be assessed for autism – so that would have made matters considerably worse and more complicated, not better.

And as for sending an emetophobic autistic with serious sensory issues to an A&E department – it doesn’t bear thinking about. I’m absolutely terrified of such places and always have been – I don’t even watch Casualty on the telly because I know that it frightens me and triggers me. The chances of me ever going to an A&E department unless I was actually unconscious are virtually nil.

But they were the only two options I was given to get any sort of care at all. So I came home and blogged and wrote poems and drank large quantities of Pinot Grigio because that was all there was.

I expect things will become even clearer as time goes on, and we’re now waiting on the second referral and probably another lot of forms to complete. The first referral is still open, and if the psychiatrist miraculously gets better and returns to the hospital then I’ll see him. If not, I’m now under referral to another centre and having to go through the whole business all over again.

For the moment, we’re sitting tight and doing what we can as far as getting me diagnosed is concerned. Our immediate concern is simply to get me sorted and start applying for any help that might be available and to close the “autism diagnosis pending” tab in my head so I can start to recover from this current episode of burnout properly, move on with my life, and become somewhat less of a burden to my husband who is managing amazingly, but cannot do this for ever – he will run out of energy at some point.

However, we are gathering information as we go. Once we are through with this we will compile it into some sort of dossier of “robust feedback” and send copies to the relevant agencies who might learn something from our experiences. A few people have told us that complaining is hard work and gets nowhere. We are not trying to “complain” (although we feel very much like shouting like crazy about how unfair it all feels right now), nor would we seek compensation or anything because we simply don’t think in that way. But it might just be that if there is a critical mass of feedback received then the system might, in some small way (even if they just get a better room with plain chairs and low lighting and train the assessor about autistics and clocks) improve, and that tiny increment of improvement might actually help someone in future. What we’d hope to do is persuade them to make the system better so that someone else doesn’t go through what I’ve had to. Although life has, in many ways, dealt us a pretty bad hand, we’ve also been privileged enough to get educated and have abilities to write about our experiences, and with that privilege comes responsibility to use it. That’s the way we think, anyway.

And discovering what a fiasco the whole thing is and writing it all up has actually helped me considerably. I’m no longer doubting my sanity in the way that I was now that I know there’s a problem with the system. I know I’m autistic – there’s absolutely no question about it – the further I get with the research, the more I remember about my life, the more I observe the way I behave now and notice the impairments I clearly have and just how random my skills are, the more obvious it becomes. I came home from the assessment thinking that I was going mad and had got it all wrong, but now I’m getting the measure of what’s going on in the system I’m regaining my sanity somewhat (or, what there ever was of it anyway)!

If this ever does get converted into a book, the diagnosis chapter might be rather lengthy. I was originally thinking it might take one blog post, but it’s not turning out that way!

Too Complicated

20-2016-12-02-13-36-42The chair I was sitting on was one of those with a fabric seat and back held together by a wooden frame. In my attempt to escape from the room coming towards me, and unable to perceive that there even existed in that room, a door, from which I might have escaped, I pushed the chair hard back against the wall. I desperately wanted to bang my head hard against the wall, because that was the only way I could stop the pain, but that tiny bit of my brain that was still working knew that it wasn’t the cushion I have at home. It wasn’t my safe bed. It was an alien hostile place with a shouty woman who didn’t believe me and thought I was a fake.

My upper right arm took the most punishment. From the wooden upright of the chair, as I hit myself over and over again against the hard wood. There was no soft safe place to retreat to.

My husband, himself still in shock and drained from the previous day trying to sort the appointment out, could only tell the woman that she shouldn’t try to stop me. He knows this because he knows that I am strong. Very strong. I’m a 5’9 person who weighs over 13 stone, can lift heavy weights and run long distances. He can restrain me, has done when necessary, and has occasionally sustained injuries doing so, but most people can’t. She certainly couldn’t have. We have since discussed how to deal with this situation should it arise again, and prepared ourselves that he will open the door and get me out, away from the trigger, away from the medics who seem still to be unable to tell me that I am autistic and still seem to be hell bent on inflicting yet more trauma onto me. We will not make the mistake of feeling that asking for help means we will get it, or that these people are on our side or understand our needs.

Perversely, the woman also discussed trauma. The words that stuck in my head were “you seem to have a lot of trauma” (no shit, I’ve been an undiagnosed autistic for 45 years, trying to survive in a hostile world and being told constantly that I’m so intelligent that I should be able to cope and I should just work harder), “intelligent women are a problem” (thanks for that, I’m so glad that I’m “a problem” – I’ll come back in the next life as a stupid man if that would help), and “very complicated” (well yes, that tends to be the case when you have bipolar disorder, severe anxiety, undiagnosed autism, probably sensory processing disorder as a subset of the autism, and some measure of trauma (see above) to add into the mix – if I was simple I wouldn’t be sitting in a hospital in front of a mental health professional asking for help, having spent months filling in forms and compiling information).

I turned back towards the table, feeling somewhat numb. The woman then said we could do the ADOS. The ADOS (Autism Diagnostic Observation Schedule) is a series of exercises used to assess whether someone is autistic. She asked if I was up to doing the exercises and said she wasn’t completely ruling out that I might possibly be “somewhere on the spectrum” or have a few traits so I might as well jump through the hoops so that when I came back in January to see, presumably, someone who had less of a problem with “complicated intelligent women with trauma”, I had at least completed the exercises. Having got up at daft o’clock in the morning and gone through all the stress I was keen to do as much as I could, so said that yes, of course I’d do the ADOS exercises. I also wondered if, at the end of a three hour assessment, when she’d got to know me a bit better and seen beyond the obviously scripted masking that characterized the 15 minutes preceding the meltdown, she’d change her mind and give me a diagnosis after all.

Then she produced a book. I won’t say too much about it here, in case other people going for diagnosis are reading and want to go into their own assessments on their own terms without my having influenced the way they behave. She told me it was a “weird book”, and, by this time, despite having told me how intelligent I was, had started talking to me like I was around five years old. My husband wondered whether the meltdown had disturbed her or something. We don’t know. I could hardly imagine that someone who was an autism specialist hadn’t seen people in a state of full-blown meltdown before.

The book was basically a book full of pictures of frogs and white houses. She asked me to describe each page of the book. I did. Turning each page and describing the frogs, the houses, the trees, a few people, and so on. It seemed like a terribly dull exercise, describing a whole load of random pictures of frogs, which is what the book basically was. It was one of those large paperbacks with few pages, such as you find in primary school libraries – maybe that was what had sent this woman into a sort of “primary school teacher” voice. It felt rather pointless and boring to describe a whole load of pictures that anyone who had reasonable eyesight could see perfectly well for themselves, and it made me feel rather weary. At the end of the exercise she asked me what I thought of the book. I couldn’t think of anything to say, so I just told her that it was indeed “weird” as she had already stated.

When I had finished the book the assessor started asking me about clocks. She had picked up from my description of the book that I couldn’t read the time from clock faces with hands. I have never been able to read the time from clock faces with hands. I told her this. I even showed her my digital watch and explained that I have digital clocks for the time, and hand clocks were something I considered purely ornamental. I can eventually tell you what the time is from a hand clock, but I have to go through the same process I did when I first learnt to tell the time at primary school – I say, in my head, every time, that the big hand is pointing here, and the little one pointing here, and I count up the fives, and add them up, and eventually work out what the time is. I’m quite fast at it when I can be bothered to make the effort, but, to be honest, most of the time it’s not worth it – get a digital watch, life is too short to be faffing about with all that counting.

The clock thing seemed to worry her. She started asking if I’d ever had neurological problems. Had I had a head injury? A bang on the head? Had I been investigated for neurological disability? Wearily I said that no, I’d never had a head injury, no, I’d never had any neurological investigations, no, I’d never had any significant bang on the head. To be honest, I couldn’t really see where this line of questioning was going, and I was starting to worry that I’d gone to the hospital for an autism assessment and I was going to end up either sectioned in a straitjacket following my meltdown, or being sent for a brain scan because she’d decided that I had some sort of traumatic brain injury. This was rapidly turning bad again.

And then, having said she’d do the ADOS, having told me that we’d do all the tests. She then turned out to have lied to me AGAIN. She stopped the ADOS. She said she wasn’t going to do any more and that the assessment was over. I still don’t know why. I had run out of energy to argue by that stage. Making words was becoming increasingly difficult and I just gave up.

My husband and I sat in stunned silence while she left the room, then came back and gave us a time and date to show up in January. My husband said he was concerned about me and asked about support. We were told that there was nothing available, and that I could make an appointment with my GP and then get a referral back to the CMHT (the Community Mental Health Team) in the New Year or he could take me to A&E (presumably by calling an ambulance). She didn’t even acknowledge his concerns about our journey home (I had to drive us) or how we would cope over the next few days. She then departed.

I cried on his shoulders and we made our way out of the building, past the waiting room with the cotton reels and mismatched chairs, and past the plant growing into the building through the wall. Out into the cold. Back to where the car was parked.

I looked at my watch. It was just before 9 in the morning. The whole thing had taken less than an hour. For a three hour appointment. I felt abandoned. Ignored. Desolate. Nobody even checked we were OK before we left.

On the bright side, we’d been expecting to pay for up to five hours’ car parking. In the end we paid for just two.