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.

The White Walkers (NOT a GoT Spoiler)

Signs that perhaps your aspie nature and long-running obsession with health and illness is becoming wildly unmanageable (read: ridiculous):

You become so fixated on the number of viral infections you've had, which GPs gently explain are a fall-out from glandular fever (how can someone so obsessed with illness have been unaware they had GF? Weird) that you become convinced you have HIV and that is the only way to explain the mystery aches and pains and tiredness and recurrent infections. You even go to the GUM for a complete screening despite complete monogamy and no needle-stick injuries.

The results are, unsurprisingly, completely negative.

Shortly after, I start falling asleep on the train to work, when you've just eaten, when you cry, have strange dreams that you confused with real life on a daily basis and struggle to sleep at night. I then believe, confidently, I have narcolepsy.

The fatigue dies down when I forget to daily Google "narcolepsy symptoms".

All week in the stifling heat and humidity, I seemed to sweat more than others, my hands shook constantly, I cried in public when trains were delayed, swore I heard announcements at the stations that no one else heard, sobbed into The Fiancé's chest about how long it could be before one of us eventually dies, and smacked a purple bouncy ball between my hands so I didn't hit inanimate objects. My support worker texted me about autism and Heat Intolerance and how you can feel like you're going...well, insane.

Someone relatively high up at work teases you when you ask for gloves to pick up any rubbish outside work and you go into overload and begin biting your hand in a toilet cubicle and covering your hands with alcohol rub. The ball bounces endlessly against the tiles and by 3pm you say, 'Fuck this. I'm taking an early finish tonight.'

Then you do come down with a cold and take your temperature every half hour, find your glands are swollen and that puffs from The Fiancé's asthma inhaler is the only thing that relieves the closed-throat feeling. I therefore believe that years have smoking have triggered COPD.

Or have been infected by hepatitis. 

Then. The night of The White Walkers.

The temperatures in the UK have shot up this past week, turning thrown away meat wrapped in bags and placed in the bin into a breeding ground for maggots. Like droplets of pus, they fell from the bin and when I shone a light on the yard, there was what can I only be described as a carpet of them heading for the house.

I used all the salt in the house, slug pellets, boiled kettles and checked through out the night that they had not squidged under the door. I spent hours crawling around the house picking up what turned out to be white scraps of tissue or dried rice grains. By 1am, I seriously considered setting fire to the bin as the ultimate solution.

The next day, The Fiancé and I mixed bleach and water and sluiced the yard and then poured the solution into the bin and taped up the bin with duct tape. Hot fumes would choke the bastards, Google said.

Afterwards, we ate a breakfast of bacon butties in front of Ink Master and enjoyed that strangely relaxing post-genocide euphoria that is perhaps shared only by serial killers.

All was well. Except for the rat that we discovered last week with the fur eaten from its skull, we weren't too worried. 

Today, heavy rains had turned the rat into a flattened white 2-D outline. I heard next door's kid scream about something and the mother shout, 'Don't go near it!' I hope she was shouting about wasps. When I checked our resident corpse, its tail had been raised and draped over a slab. Like something had grabbed it and then been interrupted...

I spent an inordinate amount of time by the back door, eavesdropping on their conversations and could only relax when I heard snippets that seemed to relate to booking a last minute holiday. Maybe they weren't about to bang on our door and blame us for rats and maggots? I emailed the council and begged them to remove the bin. 

I put down rat bait outside, chugged more Valium and The Fiancé stroked my head and admitted that it had been a particularly bad week and maybe I needed to see my support worker.

I nodded, flicked my fingers and told him I had an appointment in a fortnight. He frowned and, rare for him, advised me to gauge how I felt tomorrow before going in.

Then he grinned and said, 'How about you write a story about those white walkers?'

I'm marrying this guy for so many kickass reasons.

It Was Nothing More Than Once Upon A Time

A wise man (that would be Chuck Palahniuk, who knows a thing or two about visceral storytelling) said, 

"Your past is just a story. And once you realize this it has no power over you."

Chuck Palahniuk may remember me from such 'Stan'-style letters that ran, 'I'm a really really big fan of yours', 'I want to be a writer TOO' and 'How do you do what you do?' 

I have his delicately typed, 'Chill the fuck out, hunny' responses still saved in their envelopes. Maybe I'll frame them. 

He does makes an excellent point. So many times past memories, triggers, fears, anxieties feel like real and present danger. They make fingers go totally numb, chests cramp, bowls unleash, heads explode with pain, arms shake, voices stutter and language and sometimes actions unfold into some confusion of fighting something that is no longer happening. 

Though memories can leave great imprints, leave keloids on the heart, they are no more real than a Netflix box set or a really long novel. A detailed tangled story. Your story, but a story. And stories live only in the mind.

But those feelings. Oh, those feelings are fried gold. If a traumatic/weird/hysterically dark past can be separated from present-day living, then we have that thing some writers bitch that they cannot find. 

Plot. 

Plot is story. Plot is narrative. Plot is the tale of a person or people navigating life. Plot is someone's past formulating a future. Plot runs a book, a TV show, a film, a play, a poem.

I cannot claim that I do not get sudden shooting pains through my jawbones or numb fingertips when I get caught in the past. I can't claim I don't think something terrible is about to happen. And then I see I am stood still at a bus stop, waiting to go to work. There is a lone teenager with exploding acne sloped against the lamppost, half-awake for college. A man wearing ADDICTED sweatpants idles past me and lets their elderly dog shit on the grass verge. Life is just life as it should be.

Then I know I can gather up those scraps of past that have screeched through my head like serial killers on Spice and twist them up into fiction like horrible origami.

I think this is my way of saying today was a difficult 'aspie' day. But I went to work, hid my hand-flapping, only had mild outbursts and right now I'm in front of the laptop, favouring fiction over planning my wedding. I have fourteen months until I'm wed. I've been waiting my whole life to turn hours of cramped typing into more than something that just makes me want to sleep through my day job.

Ctrl + N. 

Now. Begin tying.

Nerdy, Dirty, Inked and Curvy

As part of my post-diagnostic care following my autism diagnosis, I have been working very hard to see the differences and not the disabilities. So, for example, instead of being continually frustrated that I cannot see 'the big picture' of a situation, I am now relishing that I can spot small details and how they connect that others may not. 

'Different not less.' Blah blah blah. 

For example, I asked a client if they would like a Hep C test in case their tattoos had been kitchen scratch jobs. The person looked suspicious. 'How do you know I have tattoos?' I glanced at him again. 'I can see them under your shirt,' I said. 

This person was wearing a long-sleeve shirt and I could see just a flash of black line work before their hand started, but it told me enough that they probably have at least one large tattoo, which are expensive and not many people I come across in any walk of life have the money for sleeve tattoos. So. Has it been done by a mate in a dirty kitchen with a machine bought from Amazon and so would they therefore like to be tested for BBV?

I digress. As part of embracing the differences, I have been pushing myself to go beyond my circumvented world (on the proviso I can return as suddenly as I choose). 

I wrote a horror/taboo story for an open submission call that had The Fiancé squirming when he asked to read it and looked at me with disgust. Showing someone my work is a big step because even fifteen minutes away from the laptop and I began to see syntax I could correct, plot that could be better juggled and imagery that could have more bite. Editing never stops. But I did submit it.

I began to get the blank spaces filled in on my arms with small tattoos that are not deep/meaningful/dark/worthy of commentary. They're cute, colourful and silly. And the artist was also crazy about The Offspring, too.

I won a Gift of Confidence boudoir (read: underwear) photography shoot with a local studio. I have never ever neverevernever been the kind of person to strip down to Batman knickers, raise my arms and cock a hip. But after finding solace with a make-up girl who geeked out with me about Xbox One (note: must finish Limbo) and a photographer who had orange hair, I was doing just that.

I'm getting older and I have to start taking more chances before I am unable to. 

Of course, there is inevitable fallout from being bolder. Submitting work risks rejection, getting 'cute' tattoos risks looking stupid and having photos that show my body risks feeling odd when I go to the Viewing Session.

 

But all people experience these risks of chances. 

There was one more significant instance of embracing the difference rather than the disability that may have triggered my weekend of doing Social Things. I was on a break with a co-worker, the same age as my mother, and in a roundabout way I explained I had Asperger's Syndrome. Directly, she asked exactly what that was (staff have recently had autism training). I explained it was a high-functioning form of autism, more hidden, not always as obvious. She asked what the symptoms were. Surprisingly, I talked openly about my sensory issues, my problem with socialising and making new friends, eye contact and how even when happy I may appear to act around 14. I explained meltdowns and what stimming is. She said it sounded very debilitating. I stated that yes, sometimes things get worse and I explained my rituals with leaving the house and multiple checkings, especially when stressed. What my own stimming and meltdowns looked like.

She clapped me on the shoulder when we walked back into work and said I handled it all very well. I made sure I didn't wriggle where she'd touched me and smiled.

So, I have that member of staff to thank for my busy albeit risk-fraught weekend. And it's a fucking shame because it's taken me 8 whole months before I could properly talk to my co-workers and back and forth freely and have them laugh even if I misinterpreted things. It's a fucking shame because I'm moving to a new job in a couple of weeks and no team will be this noisy, foul-mouthed and tender-hearted. They've done more for me than they know. Not just in learning very, very fast about managing substance misuse clients. But with integrating with a completely different career path and types of people. People who use the phrase 'You utter thundercunt' as freely as 'Is it raining outside?'

To my team: 

The Search For Silence Continues

Sometimes I'm quite amazed at how sensitive hearing can be on the spectrum. Years ago I was convinced I was going crazy. Now I know that I'm highly-tuned. But this doesn't make coping much different.

The day has been fine. In the afternoon myself and workmates went to an external meeting. After the noise and chatter settled and it became one speaker in a large, high-ceiling room, I quickly felt sick. I winced and covered my ears, trying not to look too...aspie. 

The sound of the lights, some twenty feet above me, sounded like hair clippers held directly beside my ears. It turned my stomach, made my palms sweat and wanted to vomit. I began to panic as I could no longer focus on the meeting. More frightening is that looking around, no one else appeared bothered. I began to rock gently on my chair.

Come the break, I legged it out the door for a cigarette. When I had to come back inside the buzzing room, I felt my eyes get hot and wet and I feared a meltdown was coming. I slipped over to my manager and asked to be excused. She laughed and said, 'You're not in school. You can just go.' I tried not to cry, grabbed my bag and ran out even as I heard someone call my name.

I didn't recognise town and just turned right and walked straight until I found myself back at my workplace. 30mg of diazepam took 30 minutes to kick in and I didn't want to go foetal in the street. 

Ironically, I went to see the psychologist after work. The rooms are thin-walled and I flinched for fifty minutes at cleaners dragging tables around in other rooms. When I left the room, I gagged and covered my nose at the smell of bleach.

My sensitivity is already high, but I feel like my tolerance is getting worse. I don't know exactly why. I don't think sensory issues can be progressive so perhaps it's stress-related. 

I get home and try and relax. I smell toast cooking through the terraced, but very solid walls of my neighbours' house. I know I'm not going insane. But this feels like a very mad way to be trying to live. 

Monkey Think Monkey Do

My two lifted up days on Prozac turned back into just...a day. Feel low, fretting about health (Is that arthritis? Gout? Chillblains? Let's go with chillblains) and swooping to worry about work. My note expires on 14th. 

I'd decided to stay off until then to give my mood to become stronger - my job requires a lot of mental resilience, which I didn't have a problem with when I started. Now I'm scared of being off that whole week. Scared to tell them I've become depressed/anxious when in my interview they asked how I handled stress. 

Not a lot can prepare you for the stress of this job unless you've done it before. And even then it's a battle.

So today I got the bus into the city (a nerve-wracking feat in itself) only to find the city was red and busy with Chinese New Year. Year of the Monkey. 

I've wanted to see it for years. But no emotional reaction. I had some Chicken McNuggets (I could live off these). No emotional reaction. I even reverted to an old compulsion that pops up when I feel really shitty and want to manufacture euphoria or excitement. 

I got another tattoo. 

Not impulsively. Compulsively. I've wanted this for awhile and have others planned and booked, but I felt I had to get this small one today to try to negate that crawling under my skin. A negation behaviour. That fear of the world. A safety behaviour. To me as natural as checking locks three times or being on NHS Choices daily. To check my bag when I get on the bus, during a journey and when I get off to make sure keys, purse, phone and bus pass have not been lost.

I can't stop doing these things. 

I know I'm obsessed with tattoos. And I do enjoy getting them, looking at them and laughing at the silly ones. I'm old. I don't believe every tattoo needs a deep, mystical meaning. A smile will do.

The blokes in the shop seemed as blank as I felt when I showed them the design. They wandered in and out whilst I had my ankle inked, talking about hangovers, Windows 10 and nipples. 

I barely felt the needle. I felt no excitement. That compulsive behaviour failed me today. But maybe the tattoo will make me laugh when I feel shitty.

Or I'll be on Tattoo Fixers next year.

Buzz Lightyear photo bombing like a boss

Prozac Placebo

Three weeks ago I came down with a viral infection of epic proportions. I swallowed all the painkillers I could legally get my hands on and went to work with my neck swollen to the point where it felt like my head was being crushed. By the Friday, I made it to the bus stop only to do a stop and start dance about turning back from home with an...uncomfortable stomach. 

Cue a weekend of severe stomach pain and cramps. I went to work on Friday, went home sick and saw the doctor who said I may have glandular fever as my glands and spleen was swollen and blood tests had to be done ASAP. Health anxiety goes nuclear. 

Over the next two weeks the fatigue gets worse and for some reason my mood spirals. I haven't spent every day hiding in bed crying for 5 years. Or wanting to launch myself from the railway bridge. Could it be leukemia? Liver disease? Would my workplace destroy me when I went back because we're 5 staff down and I left with work unfinished on my desk? 

I have my first ASC 1-1 and rate my Wellbeing at 3 or in my words: "shit". That was, coincidentally, my first word. She put me in touch with Spectrum E, a company who specialise in workplace support for people with ASC. I feel better talking to the lady, but ashamed. Will work detest me for having to make reasonable adjustments? Running deeper, I'm furious that I don't cope the same way as other people and need adjustments to work well. Flip it, I get good feedback. My contract was extended.

I live in fear that I will never fully integrate with other people, what my ASC worker keeps calling 'neurotypicals'. Will I ever have friends I see offline? Will I ever 'do' small talk or care about their weekends, their social lives or the things they say worry them? 

Some of this comes out in verbal fits and starts to the doctor. She's put me on Prozac. This is the first day. I know it takes weeks to work, I know I am high risk for dangerous behaviour with a number of Sections in my past, but here's the odd thing. Today's the first time I haven't cried. The first time I haven't felt awful and feel so low it feels like it's physically crushing my limbs, but conversely when I walk that half of my body is missing. 

I want to go back to work. I'm told I'm good. 'Professional', 'Capable', 'Reliable', 'Hardworking'. But I know I can be better. I admit I am frightened. Even though they know my diagnosis, I fear being found out for what I am. A 31 year old child who pulls out her hair when upset or cries when the washing machine is up. But, if Prozac helps me hide, then good. I don't want them to know what it really looks like. What daily life is like.


It can only be a placebo effect, but it's a very effective one.

Confirmed

Received the outcome of my Autism Spectrum Assessments finally on 8 January. Confirmed as Autism Spectrum Disorder - Asperger Syndrome.

A lot to take in, a lot of confusing thoughts about it and intense anger at being misdiagnosed and having been on 25 medications, 13 Sections and recommended for a CTO, depot, clozapine and Supported Accommodation. 

Carrying around my handy blue AUTISM ALERT card and starting post diagnostic support. Too much more to go in now, but this is weird. To understand I was born with brain differences and can no longer read about autism in the abstract, but in the personal sense. Feeling very much more alone from other people, that even with help I will always be different because I have to learn how to 'be social' and 'interact appropriately' and 'react normally'. 

There have been more meltdowns, more ripping of hair and banging of head. I feel distant from The Boyfriend who is trying very hard to cope with me. I want to retreat further into this bubble, stay in a warm nest of an Avengers duvet with my Kindle and Big Bang DVDs. Yet work have extended my contract for another 6 months so perhaps I'm not as fucked up as I believe. It's all internal, after all.

I can't explain better what this feels like beyond that I want to stay in my world and really don't want to tread further into other people's. But I know I need to and I suppose long-term, it would be healthy.