Out Walking

It is bright
Even through my darkest sunglasses.
Blossom scattered on the ground.
Curtains in windows uneven.
The chipped edges of the paving.
And leaves, each one defined.

It is loud
Even in the quiet part of the day.
Birds screaming a constant barrage of noise.
My handbag strap squeaking.
Construction site out of view but loud.
Car engines approach from either side.

It is strong
Even though I’m used to smells and feels.
Something flowering, overpowering scent.
Tobacco smoke from someone unseen.
Trouser seams rubbing on my legs.
The wind, assaulting my skin all over.

It is scary
Even though I am not in danger.
My heart pounds, but not from exercise.
A man with a dog, I’m instantly nervous.
I focus on walking, moving forward.
Until I reach the safety of home again.

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.

Circles

Amazingly, this is my 100th post on this blog. When I first posted to it, last December, I didn’t know whether it would ever get beyond The Discovery, and it was really just a convenient way to let people know that I had discovered I was autistic. In the last four months the blog has seemed to acquire a life of its own, and, from time to time, a few people seem to read it. I can hardly believe that it’s only around eight months since the idea of my being autistic was even suggested – in that time I’ve learnt so much about myself and my life and just how much being autistic has influenced me during the last 45 years.

One of the criteria for receiving a formal diagnosis of “autism spectrum disorder” under the current system is that autistic traits and behaviours need to have been present throughout life (because autism is a lifelong condition). Consequently, the diagnostic process involves a lot of looking back through life and, particularly, back to early childhood. I’m fortunate enough to have a mother with a good memory who is still alive and was able to supply me with lots of information about my early life (I’ll write more on that another time), and it has been interesting to discover what she remembers about my childhood and how it relates to my own memories and experiences.

I’d like to indulge, if I may, in a little imaginary time travel, back through my life, to what, for me, has become an important point as far as my life as an autistic person is concerned. I start from now, 2017, when I am 45 years old, newly diagnosed, and slowly recovering from an episode of burnout. As I go back through my life I think about the 39-year-old receiving a diagnosis of bipolar disorder, the 36-year-old who still couldn’t cook a meal, the 33-year-old who got randomly ill on holidays, the 29-year-old who spent nights bashing their head against the wall and drank bottles of whisky and ate packets of pills and hoped never to wake up again, the 26-year-old who sat at their desk trying to write their doctoral thesis while feeling like they were in a bubble and the world was unreachable, the 23-year-old who graduated top of their class but who ate the same thing for dinner every night and drank alcohol before breakfast every morning, the 19-year-old who couldn’t learn from lectures and dropped out of their first degree, the 16-year-old who was still being bullied at school and whose best friend was a cat, the 13-year-old who was routinely pinned down on the floor of the toilets by the other kids, the 9-year-old whose headmaster thought they were being abused at home, and, eventually, my time travel stops in a primary school in Bradford in 1975, where a little girl sits on the steps of a temporary classroom, crying.

The little girl is crying because it is playtime and she hates playtimes. She hates small children. They are noisy and they run around all over the place in a disorganized manner, and some of them step on the cracks in the pavements which means that very bad things will happen, and they are mean to her and some of them eat sweets in the morning which is against the rules, and so she cries, and she waits, desperately, for playtime to finish, so that she can retreat to the safety of the classroom where there is a teacher who might protect her, and where the children sit down and where it is quieter.

I know these things about the little girl, and have always known them, because I remember them. I remember many things about being 4 years old, but, as I started to question my mother, I discovered that there were things about my 4-year-old self that I didn’t know. One of these was that my teacher summoned my parents to school because she was concerned about me. I didn’t interact with the other children, and, most particularly, I wasn’t learning to write. I just sat and made my pencil go round and round in circles, filling page after page with scribbled circular patterns. The teacher said she’d never encountered a child like me and didn’t know what to do.

Finding out about this “circle drawing” was the first of many rather surreal discoveries about myself that I’d never have made if I hadn’t started asking questions because I was gathering information for an autism assessment. It shocked me somewhat, and I felt a huge sadness for that frightened stressed little kid, trying to withdraw from the world into something comforting, trying to survive in what felt like a very hostile environment. I cried many tears for her, because I couldn’t go back in time and help her, and I knew what she would have to go through before she finally understood why life was so tough. Just after diagnosis I wrote the letter below (complete with muddled tenses) to her, and during the information-gathering stage I went to a shop and bought pens and paper and drew circles and coloured them in. Because that was all I could do.

You will now realise why the “profile picture” on this blog and on the facebook page is what it is, and why I chose that particular picture for the post in which I revealed publicly that I am autistic. Today’s picture is from a similar, but different, drawing of circles.

The most important question I had for my autism assessor during my follow-up appointment was something like this: “If I had been 40 years younger, would I have still been receiving an autism diagnosis at this point in time, i.e. in 2017?” Her answer was that I would have. And she went on to say that, with the knowledge of the present day, the point at which I would have been identified as autistic would have been the point at which I went to school and sat on my own drawing circles and my teacher was concerned about my behaviour to the extent that she summoned my parents in to discuss it. That coupled with things we know about my behaviour at nursery the previous year, and various other things during my early development, would have triggered a diagnosis.

For some reason, knowing that, if I were 4 years old today I would be being diagnosed autistic, as a 4-year-old, is important to me. I have tried to think about why that is, and I came to the conclusion that the diagnosis my 45-year-old self received in February, although it covers my entire life, is a diagnosis for the future, for planning, for strategies, for rebuilding my life. The “diagnosis” my 4-year-old self received, retrospectively, in the follow-up appointment yesterday is, for me, the diagnosis that starts the process of making peace with my past – it feels like some kind of justice for that distressed little girl, crying on the steps of the classroom.

Of course, the other reason that age 4 is so significant for me as far as being autistic is concerned is that, as I started school and had to work out how to survive, it was the time I started to mask. It was the time that I started to learn what to do by watching other people, teaching myself to interact with other human beings. The social codes that came so naturally and intuitively to most others, who sought out human contact, were things that I had to learn through a cognitive process. I’m only just beginning to understand this, and how it has impacted my life. Being undiagnosed protected me from being “written off” or “cured” or whatever, but it meant that I worked fearsomely hard to try to make the world work for me and expectations were made of my abilities that I simply couldn’t fulfil. I believe the damage to my mental health started around that time – as an undiagnosed 4-year-old trying to fit in, learning to sit still, learning to socialize, and to do as I was told to avoid punishment, I was storing up the trauma that would eventually result in decades of mental illness and suicidal ideation (which switched to active attempts to end my life in my late 20s).

I’m certain I’ve mentioned it before, but one of the things that is so interesting about an autism diagnosis later in life is that it not only suggests strategies for coping with life better in the future, it also makes sense of the past. I cannot change the past, obviously, but getting the “diagnosis” for my 4-year-old self is another step in accepting it and understanding it.

Dear Four-Year-Old,

I was talking about you recently, to some nice people.

I was remembering what it was like for you at playtime at school. I was telling the people about the three big girls who used to be mean to you, and how noisy it always was at playtimes, and how much you wanted to get back to the safety of the classroom where there was a teacher who might protect you from the other children, who were frightening and who you didn’t want to be with.

I was also talking to your mother recently. She was telling me how she and your father were summoned to school to talk to your teacher, because there was a problem. In fact, there were a few problems.

I know you could already read very well before you went to school, and the teacher wasn’t very pleased about that, because she was supposed to teach you to read but you already could. She wasn’t very happy with your parents, who had supplied the books.

I found out from your mother that your teacher was concerned because you weren’t learning to write, like the other children were. Instead of writing you just sat and made circles in your writing book, using up all the paper, and any other paper available. Your teacher said that she had never met a child like you, and she didn’t really know what to do. Your parents didn’t know what to do either, so it was decided that you would not be allowed any more books so you didn’t damage them or use up the paper by drawing circles on it.

I know where you lived. I remember the street. I also remember that some kids from the street let your Space Hopper down and you were really unhappy about that because you loved bouncing up and down the street on it. And even though there was a man who worked at the garage and took it to blow it up again it wasn’t quite as bouncy as it had been before, which was sad.

I could send this to your address, which I still remember well, even though you only lived there briefly. But it would never reach you, because the mail can only go forwards in time, normally a few days or weeks. It cannot go backwards 41 years, which it would need to to reach you.

Neither can I come back in time myself, because there is no time machine. But if I could, I’d talk to your parents and teacher. And I’d try to explain that you are a bit different from most other children, and I’d give them a list of things they might look out for, and I’d work out what they could do to try to help make your life a bit easier, because I know that your life turned out to be very very hard in so many ways.

I’m not sure how convincing I’d be. A crazy person from the future, nearly as old as your granny is in your time. And, of course, there would be so many problems anyway because most of the information I have now is from books that will not be written until decades after the time you live in. I have a magic machine that allows me to read lots and lots of information about kids like you, but it won’t work in your time, because it relies on things that haven’t been invented yet.

If I could come and see you I’d try to protect you. I feel sad that you had to go through what you did, and I feel sad that your life was so hard and nobody knew how hard it was. I’d like to tell you that it got better soon, but I can’t, because you have many years of really hard stuff still to go through and many many tough times ahead. Life will be harder than you can even imagine right now. I’m sorry I can’t do anything about that, but you will find a way through, and eventually you will find out why it is like that.

But I would pick you up and hold you tight and tell you that you will, sometimes by strength, sometimes by accident, find a way to keep going through it all for at least another 41 years. There will be things that will help – your parents will not really understand you and they will not know for a long time that you really need extra help and support, but some of the things they do will help anyway. They will continue to supply books, which will help. They will get you a friend who is more comforting than any school friend could ever be, who will have soft fur and will purr for you. And they will let you do some of the things that make life feel better to you.

You know that recorder? The one you chew (yes, I know about that – I’ve still got it somewhere, and your teeth marks are still on the mouthpiece), keep playing it, and the other musical instruments you will learn in the future, because they will be really important to you. Keep reading and keep learning all the other stuff too – being interested in things and learning things is going to be one of the ways you survive in the world.

I will never be able to tell you this, but in 41 years time I will find out about the circle drawing, and I will draw some circles for you, because that is the best I can do for you. Because I am grown up now I can buy lots of really nice paper, and loads of books, and felt pens, and I can draw neat circles now and make patterns and colour them in – you’d have loved that!

When I finally tell the nice people all this, and I tell them about you and about all the other things your mother has recently told me, they will finally understand. And they will tell me some information that will explain why your life didn’t work out the way it was supposed to.

I can’t come back in time to care for you, or to explain. I wish I could.

But I will eventually find out why it all happened as it did and I will discover what makes life so hard for us. There is a word that describes people like us, even though nobody will apply that word to you in 1975. We are autistic.

The nice people listened, and heard all about you, and about the person you became, and they told me that my discovery was correct. You had a different sort of head. I have a different sort of head. We were never designed to fit into the world in the ordinary sort of way.

Stay strong little person. You will survive, and in 41 years you will understand. And you will finally be listened to and believed. And it will make life feel better and you can start to work out how to make an easier future.

See you in 41 years’ time!

A Forty-Five-Year-Old from the future

P.S. In 10 years’ time some girls at school will tell you that you’re too ugly to get a boyfriend. They are lying. You find someone who understands you perfectly and you will have a wedding with really nice cake!

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.

Too Loud

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

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

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

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

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

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

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

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

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

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

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

Out to Dinner

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!