I Am Made Of Mercury

Three things have happened recently that I believe have exacerbated my signs of autism and unfortunately made passing something a lot more difficult to achieve. People have now noticed something is 'up'. 

I will try to keep this as brief as I can. But I can't promise.

There was an instance during training connected to work whereby a facilitator made what I felt to be a discriminatory remark towards people with autism and other developmental differences. As a result, I got agitated and left the training to avoid a meltdown, but did return for the further two days training. Someone else brought this to my line manager and I had to write up, in detail, what had happened and disclose my difficulties and my autism. I am still waiting for an outcome from this three months later. This worries me. Who/how many people have seen or scrutinised private and personal information about me?

I decided to come off my Prozac after I was sedated to the point of wanting to go to sleep on the train platforms on the way to work, sleeping standing up and contemplating walking into traffic. I also noted my 14lb weight gain since going on Prozac.

So I ceased it and after an initial week of energy and euphoria, I was back to crying in public, at work, and rapidly lost my filter so that I saw connections to all pieces of information that I absorbed. 

Then I went out on a social night, for the very first time, with some girls I had never met before. The PG Girls were welcoming, funny, gorgeous and yet I broke over five years of sobriety (bar the odd drink every few months) by drinking solidly for nine hours so that I could do social. 

I then did something very very stupid. 

I was wearing a ring and I had taken it off and put it in my pocket for safekeeping as I was going to be crashing on a bed in the house of the one of the PG Girls who had kindly let me stay with the others at 5am. I vaguely remembering admiring a chunky black ring at some point that I saw in a kitchen. This too went in my pocket for safekeeping. Unfortunately, what I did not remember at the time, but later discovered when the girl messaged in a panic, was that this was her partner's engagement ring.

I immediately stated that I had drunkenly walked off with it and was very sorry and would return it ASAP, which I did. Along with a card and some limited edition Garbage Pail Kids stickers. 

Now, here's where it actually relates to autism.

To my mind, which has only 5% Theory of Mind (1/20 on the test), there was no longer a problem. I had explained where the ring was, apologised for a drunken walk-off and the very real fail in judgement by getting that drunk (even recognising that it was a very bad impression of myself to give) and then returned it ASAP with a card of apology. 

This girl has, of course, expressed her anger at my being trusted to stay in her house as a new person who then walked off with something of high value. I was distraught because this time I did understand what she meant and for the first time, I realised that I couldn't solve a social fuck-up this large with an apology or a practicality. The girl asked for time before she could trust me or even see me socially. She asked that I did not attend lunch with the rest of them because of this.

I then realised that I have never made friends with anyone outside of a structured environment. My friends have always arisen firstly from being around people for long periods in a stable construct. School. University classes. Shared hosues. Work places. But never befriended new people in bars and clubs. And when I was added to The PG Girls chatty Facebook group, I saw keenly how they interacted. How well they knew each other. Had jokes about Disney, knew of each other's food dislikes, children's birthdays, type of dogs they have. 

This may sound sad, but I tried to fit in by buying the things they liked. I ordered Killstar clothes I will probably look terrible in, a 'Unicorn Tears' shade of lipstick that is supposedly sold out everywhere and told them of new piercings I wanted. I do actually want these things, but now I question my motives. Is it for me or to fit in with a new crowd? 

This must be made clear. I don't mean to make them sound shallow. They're not. They're lovely, caring, fun-loving and want to look pretty and badass. 

I'm a tomboy. I always have been. I wear baggy jeans and most days just wear foundation for make-up. I like hoodies, not corsets. I don't do heels. I won't fit in with The PG Girls unless I can accept that I should just be me and stop trying to pass in a new way. They're smart enough to see through that eventually.

So what now?

I'm back on Prozac and tired and numb. My workplace support has been approved after four months though now apparently my probation must be extended, despite my work being described as 'exemplary'. I have learnt not to go to certain staff when I'm struggling because only now have they admitted that they know virtually nothing about autism and I feel that's underhand to state that you 'understand' when you later state that you actually don't know what a meltdown is.

And I'm pulling away from The PG Girls, because even though I think they're great and I'd love them to be my friends, I'm no good at starting new friendships and it's no good trying to break into an established group. I'm better on the fringes. It's chilly here, but at least I know where the line is.

The Bus Driver's Cubbyhole of Misery

Sometimes it's a simple miscommunication that brings about a meltdown. Something as broad ranging as 'social disability' may, on certain days, not be triggered by two shouting people in the street, but by one ignorant person.

I can confidentially say I was doing the right thing. And a nice thing.

I can assert that this first month in a job that requires 3 hours of commuting and resisting the urge to bang on train windows where restless or jump down onto train tracks 'just to have a look' is incredibly difficult.

Today I got on the bus home, a First Bus. The 36, if you're interested. I got on with my C+ pass. It was on time and not crowded. This was good. Two stops on a young girl got on and said, '£1.50.'

The bus driver growled, 'There is no £1.50. You tell me where you're going.'

The girl replies, 'Right near X Street. I've just finished work and I get this route every day and they always charge me £1.50.'

Him: There's no button for £1.50 and I've been doing this job for 4 years.
Her: Can you check?
Him: Okay. Do you wanna put money on it?
Her: What?
Him: Do you wanna put money on it?
Her: Look, what is it?
Him: £1.60.
Her: Oh, right. I thought you were going to say loads more.
Him: It will be if you're going further.
Her: I'm not. I'm going just by X Street.
Him: Just get on already. But I'm warning you, you get off when I say.

The bus goes on. At a stop that is...somewhere, the driver stops and orders her off. She stands and goes to his little cubbyhole of misery

Her: But this isn't where I get off!
Him: You get off here because that's what you paid for.

They argue. I start feeling squirmy, hot-eyed, like I want to bite my hand. I have a ten pound note and a five pound note in my hand.

I get up and approach girl and driver. I hold out my bunched-up notes.

Me: Hi. How much more does she owe? I can - 
Her: [To me] It's okay, cheers, I have the money, it's just - 
Him: Just get off the bus. [To me] You, sit yourself down. [Points arm back down the bus] Now.

I recoil. His tone was direct, an order, threatening. Will he throw me off the bus in the rain?

I don't sit. I lean against the pole, clutching my money and hugging my bag. I feel scared. My brain is losing its filter rapidly and I run a conversation in my head. I will explain that I was doing a good thing, that he was rude and that he shouldn't have said that to me. He will understand because he is human.

At my stop I don't get off, but stand by his cubbyhole of misery.

Me: Look [shows him the two notes] I was trying to help by offering to pay any extra she needed.
Him: She had money. She already got an extra stop, that one.
Me: But you didn't need to order me away like that. That was rude.
Him: I told her to get off.
Me: No, you were rude and ordered me away, which is wrong. You shouldn't be rude. It's not nice.
Him: You were interfering.
Me: [Holds up bright blue AUTISM ALERT card] I have autism and I was trying to help. Why were you mean?
Him: You were interfering. We'll leave it there.
Me: But - 
Him: Get off the bus.

I have a high-impact job. I deal with chaotic, vulnerable and yes, occasionally hostile people. And despite my facial expressions, I do give a shit. Today before I got on my train to work, I checked in with a homeless man who looked like he was going over and made sure to warn him to stay away from town in the afternoon in case it kicked off post-match and to also find out what had happened to the others tenting out. Answer: they were burned out.

I deal with the stresses of adult life and obsessions and rituals daily with a consistent lack of Theory Of Mind - I assume everyone thinks and approaches all situations as I do. Brain scans of autistic people even show a difference in brain make-up. Yet in my personal life, I cannot 'pass' so well. At work, I act a role and it exhausts me. Personally, I may be emotionally mature as the average 14-year old. 

Does this explain why after getting off the bus this evening, I put my hood up and actually cried the short walk to my house. Why, when I walked in and The Fiancé asked what was wrong the first words out of my mouth were, 'I'm a stupid fucking autistic freak' and ran upstairs to hide. I am 31 years old.

Since my diagnosis I have never referred to myself in those terms.

This was not a serious incident. Not a major assault on my personality or physical self. No one threw excrement at me or kicked me or called me a retard. Yet the mismatch between my want to do a nice thing and then being insulted and then finding further insult when I disclosed my autism stung more than anything else has in many months.

The Fiancé put it in simpler terms.

'Maybe he was angry because he missed the match. Or perhaps he had to deal with lairy fans all day. Or, maybe, just maybe, he's just a total twatwaffle.' 




POSTSCRIPT: The blue Autism Alert cards have so far proven utterly useless.

Could Everything Be Less Noisy/Less Smelly/Less Itchy, Please?

I met for a 1-1 with my ASC worker recently who is referring me to the newly-qualified psychologist on the team (so new, I'm sure I can hear braces on her teeth) to help my 'well-being' and to help with social skills and sensory difficulties.

Social Skills is going to be a very hard one to work on because I've gotten very good at 'passing', however I know that what I'm saying is completely without feeling and is invariably copied from TV or the radio. In fact, the things people laugh at are just quotes from films or sitcoms. When I get really, really comfortable with people I will 'pass' less i.e. I will feel able to be more like me. Unfortunately, where I feel most like me, most comfortable is around the emotional age of 14. It's like my cognitive reasoning kept maturing, but my emotions didn't. So, when I'm happy around people, I will run around, blow raspberries, swear, wear silly t-shirts, giggle and then eventually make what I'm told are inappropriate comments such as, 'Are you limping because you fucked last night?'

The plan is for me to either work on passing (which I very much hate doing) and understand that sometimes you can't tell people how many times you've had sex this week or that you think some people are completely irredeemable thundercunts, without getting into trouble. I don't think that's an honest way to live, but apparently it's correct. 

Or I just say that I really don't care what other people think of me. Maybe that's worth a go.

The other issue is sensory difficulties. Reportedly of all the people that have been assessed, under Sensory Difficulties I've come in as one of the lowest scorers (1-2 (most people are coming in at a minimum of 5)) and have been the topic in supervision, mostly because I explained how I can hear electricity or bubbles popping in a glass of Coke from 14 foot away. 

For years, psychiatrists thought I was hallucinating. I thought I was hallucinating. But it appears I'm very in tune with sound, smell and light/colour. For example, my 1-1 was in a different room. I was about 4 foot away from a small wooden coffee table. It stunk. It smelt like untreated wood and that it had been stored in a musty second hand shop and previously owned by smokers. I asked my worker if she could smell it. She couldn't, but dutifully put her nose on the table and only then could she smell what I described. I could smell it freely in the air from a distance of at least 4 feet. 

It's no surprise then that I'm constantly jumping around my house and workplace trying to work out noises that are deafening to me or smells that seem to be taking over, but don't bother anyone else. That's a lot of energy spent chasing intangibles. 

Maybe just watch this video from NAS about a kid in a shopping centre and imagine that that level of noise is normal and makes you feel like the world is about to explode, you will implode and everything will cease to make sense unless you scream your noise over the top of it and move your body to shut out other people's noise and pointless information.

Hospicable

This is a long post, I'm afraid.

So, I've been ill. Two Wednesdays ago, I had quite epic D and V followed by generalised stomach pains. I saw a GP registrar on Thursday about getting some repeat meds and mentioned the D&V, nausea, and that the pain had moved to my right lower side. He just mumbled about seeing how it went. By Thursday evening, I was in agony and crying, in between taking codeine and paracetamol. By Friday, it was hard to walk and coming back from the cornershop I had to stop and was doubled over in pain. So, succumbed to my health anxiety and called NHS Direct. They called an ambulance.

I was taken through to the Red Zone of A&E, had blood taken, and had a cannula placed quite violently in my arm. They prodded my stomach and said they'd refer me to surgery for suspected appendicitis. But I didn't mind too much, because they gave me IV morphine.

Wow.

Everything became soft and gentle, and I remember my thoughts being pink. Every sound coming from Resus sounded far away and I remember smiling and having no pain at all. I didn't care what was wrong with me at all.

Four hours later, I was wheeled up to the Surgical Assessment Unit. A nice nurse chatted to me and I was quite upset and scared and was pulling my hair out. I was given codeine and my diazepam. I didn't sleep well as a Healthcare Assistant kept hiding in the bay I was in to use her mobile. She was obviously not meant to do this, as she kept hiding her phone when other staff came near. Myself and another patient gaped at her. I filmed it on my phone. I was on Nil By Mouth until 10pm when I saw a junior doctor who said I'd probably just pulled my muscles from the D&V. Then I got toast. Then I was told from 4am I'd be Nil By Mouth again for an ultrasound the next day.

Saturday, my back seemed to lock up and I had trouble walking and it was very tender to touch. When breakfast arrived, the new nurse in charge (who looked very happily stupid) said I could eat. I had a little bit of cereal and then a doctor appeared who said I should be Nil By Mouth. I yelled at the nurse as it would delay my scan. She said it would happen later in the morning. Dinnertime it hadn't and I wasn't allowed to eat or have anything more than sips of water. I felt awful. By night, I was told my scan had been cancelled so I could eat. But I could only manage a little bit. I was angry that plans were being changed and no one was keeping me up to date. I screamed when the nurse 'reassuringly' patted my arm and I yanked out more hair. She backed away and then started burbling about an injection everyone had to have to stop blood clots. I was already upset and I couldn't understand. I went outside and came back and lay on the bed with my hood over my face. I'd bought a £10 Big Bundle TV card, good for 24 hours, and vaguely remember watching Meet The Goldbergs, The Big Bang Theory, and Big Hero 6. The nurse came back, gave me another codeine and left. Later, I went into agony and was given OraMorph. The night nurse discovered that my cannula was bent where it had been put in and it later just fell out of my vein. Now have a nice painful lump there.

Sunday, I was screaming the ward down for morphine. I had an ultrasound. There was no female chaperone. I didn't like this, but the porter for radiography was very nice and actually made me laugh, which was a real boost.

But then the surgeon came with the results. Not serious news, but unknown to me. Ovarian cysts. He was very cavalier about it, said no point in operating and spoke very quickly. I asked him to slow down or write it down as I have problems processing verbal information quickly. He wouldn't. I asked about fertility and he just shrugged and said I should ask a gynaecologist.

I limped off the ward in tears and phoned Mum. I was terrified. I didn't know how they could be sure the cysts were benign, if I meant I could have children. I shouted that if he'd been told there was a lump in his bollocks he'd be pretty scared. She calmed me down and told me to get the nurse (nicer than Saturday's) to slowly explain to me. The nurse did and told me to stop pulling out my hair. She gave me printed information on cysts and calmed me down. I messaged female friends and turned out a few of them had had them and said it was common, had had some pain when they 'burst' and had had problems conceiving, but that had conceived.

I had morphine and slept for an hour and then felt happy and trippy and read and wrote quietly. With just enough internet signal and a morphine high I ended up ordering kawaii handmade jewellery on etsy.com for a few hours and enjoyed re-reading Donna Tartt's The Secret History. I appear to have ordered a custom junk food charm bracelet, a Chuck Palahniuk quote engraved aluminium wrist band, a “Valar Morghulis” necklace, some skateboard stickers for my Kindle, and Harry Potter necklace for my friend's birthday. I think.

At about 3am after seeing a nice junior doctor, who said the surgeon hadn't been professional with me. The new ward staff were nice and treated me with kid gloves. I finally went to sleep around 4am after they gave me morphine to induce sleep.

Monday, I woke up with the worst migraine I'd had in a year. I screamed for morphine for an hour and half, but there was only one qualified nurse on the ward. Mum called in the middle and she was furious so called the ward to complain and explain my problems. Finally I got morphine and Imigran and fell asleep. Getting the Imigran was difficult. They knew it was with me and locked up by my bed, but I was wasn't written up for it. The nurse showed me the chart and I said I knew all that and that because it was mine I was allowed to self-administer. She said that was right. I asked then why didn't she just get the keys and let me do that? She sighed and did so. 

Woke up and then needed more morphine. Had to lie with a t-shirt over my eyes and a cold can of Coke on my head. Yelled at a healthcare assistant who came to make a bed and left a radio on. A surgeon came to see me and said I needed a CT scan as the back pain could be kidney problems. He told the staff to draw all the curtains and turn off as many lights as possible, which I appreciated.

I was injected with a dye, which made my insides feel very very hot. Then my stomach was scanned. When I sat up, I threw up 800ml of water and orange juice. This actually helped my migraine a lot. By now I was written up for regular morphine and looking at my chart, had had it increased from 5ml to 10ml to 20ml every four hours. I slept well that night.

On Tuesday, I was told my CT scan was normal, but my right leg was puffing up as I'd been dragging it due to back pain. I was given another blood clot injection and told to bend my leg more. A junior doctor checked my legs and back and said there was no point referring me to orthopaedics as it would take awhile. So, I was to be discharged with lots of painkillers, see how I went over the next week and see my GP to discuss a gynaecological consult and physiotherapy. Then we had this awkward conversation:

Me: Umm, before I came in I was having...pain...during...sex. So, with this cyst how long should I, umm, wait? 

Him: Well, I'd ease into it, if I was you... 

Me and Him: [sniggers] 

Him: But, no, you're not going to do any damage if you have intercourse so, you know, just, umm, when you're ready [smacks fist into palm] go for it. 

Me: [laughs my head off]

The nurse in charge was so nice and friendly that day and it made me happier. But she was furious when the junior doctor disappeared for four hours and didn't answer the phone to sort out my discharge. She said for me to go outside to calm down so I wouldn't yank out my hair.

A strange thing happened. The nurse told me that as I had run out of cigarettes, to take 10p out with me to see if I could buy one off someone. The man I saw wouldn't take my money, but rolled me a cigarette and then rolled another without asking and said I'd probably want it later. I was genuinely touched. Then a man he knew came outside. This man's partner had just given birth to twins. The man who rolled my cigarettes, his wife was in surgery for breast cancer. The new father had no idea. There was a strange moment, opposite ends of the spectrum of life. I left them to it.

When I got back upstairs, the Ward Sister had chased down the doctors and had my paperwork and meds ready. The lovely nurse gave me a hug, which I didn't mind too much, and I gave her some chocolate. The Boyfriend picked me up and couldn't stop kissing and hugging me. We went to his Mum's and his brother and his girlfriend were there and it was nice to see people I knew and enjoy my trippy morphine high around friends.

Later, The Boyfriend was what we call 'goo-goo' and followed me around and kept cuddling me. We'd really missed each other. I felt overwhelmingly happy to be home. The Boyfriend had gotten me a pretty 'festival-esque' watch, which looks great.

Today, I am trying to move around more and ignore my health anxiety about my right calf being a bit swollen. It must be from lying around for so long. The morphine makes my pain all but disappear and make me at first tired and then strangely creative.

What I have learnt from this is that hospital staff, for the most part, know what autism is, but don't know how to communicate with someone who is high-functioning. They don't know they should keep someone up to date, even if there's no new news, inform about changed plans, and don't touch without asking. And always give written info. I have contacted NAS and will fill in a “Hospital Passport” form that would explain my needs should I need to go to hospital again.

So, stressful, lost a fair amount of hair, and in slightly less pain than what I went in with. But, just happy to be home and around familiar things.

What is quite horrible is that I know that when I have a meltdown, I must look as though I am twelve and throwing a tantrum. In my world, my head, it feels like a change in my routine = end of the world, everything is destroyed and I have no idea what comes next. It is so out of proportionate, yet it is very characteristic of this brain thing. What I really want to learn is how to 'shut down' quick enough so that these incidents can stop happening. It's embarrassing.