Under the weather

I’ve heard it said that autistic people, on average, tend to get ill less easily. I don’t know if this is true, but my immune system was definitely on my side last week when it got to my second annual appraisal meeting at work, and I hadn’t had a single sick day since I started a year and a half ago. Well done me, I thought.

Then the following weekend, I came down with a cold. I’ve put up with colds before. No biggie. After three days of trying to function normally with my temperature going up and down, however, I had to admit defeat. So on Tuesday, I swallowed my pride – along with some painkillers and some hot honey and lemon – and rang in sick.

Huddling in my room, too bunged up to catch up on sleep, I realised how out of practise I am at being ill. A clear testament to the privilege of being a very healthy person. What do sick people do all day? I spent most of that morning blearily wondering this, before giving in and making myself just sit quietly and read, or watch stuff on my laptop. In hindsight, that was probably all I needed; while I’m still shaking off the last of this cold, I noticed a marked improvement the next day.

I like to think I’m pretty stoical when it comes to discomfort, but some of my childhood memories imply that I took a while to get there. Namely when I developed a bladder infection aged five. I was notoriously bad at taking medicine at that age, and would gag so dramatically when it was forced upon me, it was actually disturbing. To top that, I was throwing up a lot, refusing to use the toilet, refusing to co-operate for the doctor, and screaming the house down. It got so bad that my poor mother joined in the screaming after a while. How I got better, I’ll never know.

I spent most of my childhood being irrationally worried about illness. You could blame it on my trip to the smallpox museum with my now-stepdad. He found the whole thing fascinating, but the wall of photos of pock-marked children will stay with me forever. More seriously though, it was probably an unfortunate mix of common sense (illness is bad and needs to be avoided) and neuroticism (knowing something is bad and wanting to take EVERY possible measure to avoid it). I panicked if someone in class felt sick. I refused to touch stale food. I was even afraid of going to bed and waking up with a tummy bug. Irrational, I know, but I do remember thinking it.

Having narrowed down these fears to specifically vomiting or deadly illnesses, I got a grip and learned to stop complaining. Unfortunately as a teenager, I even took this too far. I developed what looked like infected insect bites, and put up with them for three weeks. Three lots of antibiotics and several medical appointments later, it turned out I was not only running a fever, but had a rare staphylococcal skin infection and was at risk of blood poisoning. Definitely worth complaining about.

So as you can see, my approach to illness has zigzagged somewhat over the years. I’m still squeamish about vomit, but that aside, my rule of thumb is: eat healthily, rest well, and you’ve got a good fighting chance. And when your immune system does give in? There’s no point in beating yourself up for not functioning at full speed. Make the most of the chance to be quiet, comfortable, and still for a day, and hopefully that’s all you need to get back on track.

 

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My first signs of autism

Having long outgrown my phase of hating talking about my Asperger’s, I have since had many conversations about the topic. And recently, one or two people have asked: how did my parents first know I was autistic? Good question.

I don’t have a problem with people asking, let me get this straight. What I do struggle with is answering. It’s a past-tense version of the even more common question – how does autism affect me? My immediate inner reaction is much the same: how do I explain something that feels completely normal to me? My parents could probably give a 10 hour talk on the subject if you asked them, but somehow, most of the time they aren’t there to answer the question for me.

Besides, I quite like not relying on them to talk for me. So I did a bit of research and dug out my old school reports and other SEN* related documents. Voila, a basic summary of a small, autistic me.

Special interests: I had an in-depth knowledge of animals. My favourite bedtime story at one point was a sealife encyclopaedia, and Mum and I spent many happy evenings reading about different types of sea slug. At a snake exhibition, 5 year old me thought there was nothing strange about announcing to the host: “I had no idea corn snakes were polymorphic!” Years later, my go-to conversation starter was “I know all about cat breeds!” When faced with a task at school that involved pictures of various animals, I pointed to the duck picture, and asked what breed of duck it was. The answer was – a line drawing!

Reactions to sensory stimuli: Apparently I was an unusually placid baby…except when people touched me, then I would scream in their face, an urge I still have to fight if someone I don’t know touches me, haha. During any noisy school activities, I would cover my ears if the other children were being too loud…but failed to notice a fire alarm that went off while I was particularly engrossed in some drawing. I was obsessed with food…but would gag dramatically on foods with certain textures, or pretty much any medicine. Yeah, I was a bundle of contradictions.

Interactions with people: I didn’t pick up on facial expressions, body language, and social expectations, and consequently, kids either got bored of me, or took advantage of my naivety. If someone asked me if I wanted to play with them, I would just give an honest “no”. I struggled with concentration and working memory in lessons, and needed an adult to repeat things to me one-to-one. I would show physical, mental, and emotional signs of exhaustion a few weeks into each school year simply from trying to keep up. Yet when given intelligence tests, with just one adult and no kids for company, I kept declaring how much fun it was!

I could go on for ages, but I think you get the idea. Growing up on the spectrum wasn’t fun, but I did it, and I largely have my parents to thank for that. Besides, I like to look back at these things and laugh. Because when you were as weird as me as a child, you just have to!

 

 

* Special Educational Needs

A trip down memory lane, and what I will remember from it

When I was little, my mum took my sister and I to Lee Abbey in north Devon, a Christian holiday and retreat centre we returned to many times throughout the rest of my childhood. Having reached a pretty big low at that point in our lives – not that I was massively aware at the time – meeting my now-stepfather that week was, in hindsight, a sign that things were about to turn around. But I wasn’t interested in minor events like that. Not when I had a whole three storey building, complete with open fields and woodland trails, to explore.

In that holiday, and subsequent ones, I went on numerous adventures. I played my violin at one of their entertainment evenings and had my photo featured in their brochure. I climbed a whole 2 feet into my first and only tree. I got knocked over by a child on a bike when I was playing outside. I discovered room 401, the highest room in the building. Wild times indeed!

Fast forward to early August 2019. At the ripe old age of 26, I felt it was high time I grew up and attempted my first solo holiday. After scouring the internet for cheap package holidays abroad, I decided to take a trip down memory lane and back to Lee Abbey.

I’ll be honest, it was partly because going abroad alone still looks too complicated right now. But I also wanted to see how it would feel to revisit a part of my childhood, and what I might take from it. And it was great. My room was directly below room 401. I went on solo walks every day just to immerse myself in the outdoors, or to explore Lynton. Despite my social awkwardness, I got chatting to dozens of people from all walks of life during mealtimes. My poor tree had been reduced to a stump, but hey, you can’t have everything.

So what have I taken from all this? Here are a few little things:

  • How easy it is to get back into creative activities, such as drawing and painting, in a place with minimal WiFi
  • The simple joy of sitting in a secluded outdoor spot high above the sea with your journal, book, and bottle of ginger beer
  • The relief of being far from work and city life for a while
  • How much smaller old childhood haunts somehow become when you retrace your steps as an adult – when did those massive staircases get so much shorter?
  • The necessity of changing your routine briefly just to refresh your faith and your perspective on life

To conclude, here are just a few photos:

Tales from the gym

Exercise has always been important to me. I’m no athlete – my parents both run regularly, my mum was a Pilates instructor for many years, my stepdad swims, and my sister is a qualified dancer and actress, leaving me feeling like the family couch potato. In my defense, I have been going to the gym regularly for several years now. I don’t claim to love it, but nevertheless keep it up because I know it is good for me.

Last month, I moved to be closer to my job. If you had asked me then if I had any worries about this, the actual moving process would have been top of the list. Joining the gym that is conveniently across the road from where I work wouldn’t. Moving day came and went pretty smoothly, with little to report. My new gym, meanwhile, has probably caused me to burn more calories from sheer stress than from the exercise itself.

I spent my first visit being unable to find anything; namely the entrance to the building, the lockers, the lockers that had functioning locks, the labels on said locks telling me to use a 10p coin (instead of a £1 coin), and the gym itself. I could barely be bothered at this point, but thought hey, I’m new here, of course everything’s confusing, things can only get better.

Oh how wrong I was.

When I returned, I filled in a membership form. Come the third time, I tried to get in as a full member, except that the staff had no record of my membership on their system. Their most logical explanation was that I must have put my form in my bag and taken it home. Needless to say, there was no sign of it, nor any way that I would have been allowed to go ahead with my workout without handing it in first.

Which indicated that they must have mislaid it. Complete with my bank details, written loud and clear. Not good.

Feeling pretty fed up about this, I politely but firmly raised the issue with someone at the desk. They just told me to fill in another form. I reiterated that someone here had left a document with my bank details on it lying around goodness knows where for all and sundry to see. This interaction was repeated a couple of times before I gave up in frustration.

I then sent an email via the city council, retelling the story and highlighting the GDPR* rules at stake, which gave them a bit of a nudge. After some careful scrutiny of their CCTV cameras, a member of staff discovered that I had not filled in the entire form, and the person who had taken it had shredded it, but left no notes on the system. To compensate for all the stress – and the fact I’d needlessly changed my debit card – they gave me 2 weeks free membership.

Of course, not every staff member believed me during that 2 week period, or was able to find the notes explaining why I was getting in free. But it’s the thought that counts.

And now I am a full member. What could go wrong now?

 

 

*General Data Protection Regulation

Getting the bus

Public transport has played a major role throughout my life. In fact, given that I was born abroad, you could argue that without it I wouldn’t be where I am today. Literally. But just lately, it has been finding new ways to have a bit of a joke with me. So I thought I’d return the favour and write a blog post at its expense.

Since March 2018, I have been getting to grips with the bus. Having spent several years taking the train to uni, work experience, and my bookshop internship, I then got a job in a place that was only accessible by road. It still runs on wheels, I thought. How hard can it be?

After insisting to my parents I could get there unaccompanied on day 2 of my job, I then got onto the slower bus – the one I’d been advised NOT to take – and was late for work. Despite this, I was determined that this was just one slip up, and I definitely knew what I was doing now.

The following weeks disproved this. I didn’t realise I had to wave at the driver so I could get on. Or that I had to press a button to get off. I misinterpreted the ever-changing ETA* updates on the signs and gave up on many an incoming bus just because it temporarily disappeared from the sign. At this point, I thought: hey, it’s early days, this time next year, buses will feel just as straightforward as trains.

I’ll be honest – they don’t. Take last week, for example. My bus pass expired and I didn’t have enough cash. When I bought a regular return ticket, the driver was unable to print it, and said if I explained this to the driver on the way back, they’d understand. Come home time, the bus driver I saw refused to let me on without printed evidence. The irony was, this driver seemed unable to print tickets too.

When it’s not ambiguous rules, it’s the actual journey. Like when I sat down on a suspiciously wet, smelly seat. Or when I walked downstairs from the top of a double decker and overheard a bunch of teenagers saying “I would have laughed if she’d fallen over!”.

My most draining journey happened a few weeks ago, when 30 seconds after getting on, the heating broke down, and we were escorted onto another bus. The only downside to this bus was that it violently shook and made an ominous rumbling noise when accelerating, and so it was that we waited another 30 minutes on the A6 until another bus turned up. Choc full of people, with barely enough room to awkwardly stand backwards, not knowing what to hold onto.

By the end of the day, I’d had enough of my usual bus, and went for the slow bus instead. No problems there. But why it was covered with onions, I’ll never know.

Mercifully, it looks like I may be getting some respite from commuting – this coming Sunday, I will be lodging just a 15 minute walk away from work. Don’t get me wrong, I love leaving the house at 7.15 every morning to get two buses that are probably running late and full of screaming children. What’s not to love? I ask, sarcastically. But strangely, this has started to wear thin, so as I get re-accustomed to living away from home, watch this space!

 

 

*Estimated time of arrival

10 assumptions I have had to deal with

Oh the joys of being a mixed race, autistic woman…

  1.  I got into a conversation with someone at a church I went to a while back. Having briefly mentioned I have Asperger’s, they asked me if I had ever been to uni. Their response when I said yes? “And what did you study? I bet it was Maths, Science, or IT! All autistic people I know did something like that.”
  2.  I was walking through town one day when an older woman – a complete stranger – tried to offer me Chinese literature.
  3. Someone once asked my mum if I could talk.
  4. At least one person my mum has spoken to has assumed I must be prone to rage and aggression. The irony is, many of my problems at school and uni were a result of me being a complete pushover.
  5.  I mentioned on a job application that I’m half Taiwanese and was born in Taiwan. Despite me also stating that I live in the UK, they contacted me asking what time would work for an over-the-phone interview, given the 8 hour time difference between here and Taiwan.
  6. At primary school, a couple of kids in the year below me came up to me and asked – completely seriously – if I had brain damage.
  7.  Someone at church who I’d never met (not all Christians are prone to things like this, I assure you), came up to me and asked if I spoke English. On realising I did, they then told me that they had met a French student, and were trying to find other foreigners for this student to make friends with.
  8. This was more about my mum than me: when I first started school, my teachers noticed something was different about me. Rather than considering autism, or any learning difference to be a possibility, they were sure it was a result of having a recently divorced mother. When they arranged for me to be seen by a doctor, or a psychologist, or someone along those lines, the person in question tried to get me to take my clothes off so they could check for bruises! To which I replied: “But it’s rude to show someone your knickers!” I made my mother proud that day.
  9.  When I studied French at secondary school, I was put in the “mixed ability” class. I spent the next 5 years feeling frustrated by how basic the work was, and trying, with my parents, to get the teachers to move me up a class, only to be told I would not be able to cope with being in top set. Weeks before my GCSE French exams, I was moved up a set, and passed my exams with a high B.
  10.  At uni, I joined the choir, only to find the communication impossible to keep up with and the events we did overwhelming. Choir was supposed to take priority over any other non-study related things in my life, yet I felt completely invisible there. I tried to get through to the leader, but as friendly and well-meaning as they were, they were sure I was doing fine because they hadn’t noticed any struggles I was having and were sure I must be doing fine.

Thank you for the music…

…the songs I’m singing…I do love a bit of ABBA.

Last weekend was a particularly full one, comprising a double (triple?) dose of musical endeavors. Church band practise on Saturday morning, choir concert Saturday evening, and church band on Sunday. The choir concert started with me understudying a singing solo, and ended with us all singing patriotic British songs and waving Union Jacks. Church the following day saw me playing my usual trick of reading a chord sheet, improvising on my violin, and hoping for the best. Just another Sunday in the band!

Music has been an important part of my life since I was six. I was asked at school if I would be interested in violin lessons. Given that we were on benefits at the time, I’m not sure how my mum must have felt when I said yes before consulting her, but I went ahead with it, and before long, I had learned my very first song. It may have included only two different notes and not many more words. But it still counted.

As the years went by, I grew more adventurous, and was always quick to volunteer to play for any occasion. I played Morning Has Broken at my parents’ wedding all by myself. During my first year at my second primary school, aged nine, I played in the school talent show and won the “special commendation award.” At the time, I thought this was the greatest thing ever. Right now I find myself wondering why I didn’t qualify for first, second, or even third place…

I also started playing at my then-church’s junior music team. I frequently stopped playing in favour of daydreaming, and needed constant help from the child next to me. And our leader. And my mum. A few years ago I discovered a note from our leader at the time, expressing concern and thinking that I was only in it for the snacks afterwards. Perish the thought.

I hasten to add that my attention span, dedication, and awareness of other musicians have improved greatly since then. I have since been in two church music teams, and have not required parental supervision or food motivation once.

Once I got to secondary school, I joined not only the school orchestra, but also the steel pan band. It was an interesting life decision that resulted in years of steel pans lessons at unpredictable times, an issue that got mixed reactions from teachers in my regular lessons. I did have fun learning songs like I Have A Dream, Amarillo, Yesterday, and Rocking Around The Christmas Tree, though. And the memory of playing in the local shopping centre while Mum and her friend posed in tiaras and feather boas in a nearby accessories shop to embarrass me still makes me roll my eyes today.

And now I go to choir every Saturday, and play at church once a month. I have less time for music than I did, but I’ve never stopped finding the fun in it. It keeps my skills sharp – my stint in the Loughborough Orchestra taught me a lot about pretending to play classical music perfectly! It’s also given me some great experiences, and through my musical activities I have often found a sense of fellowship. I may not be a professional, but I will keep marching to the rhythm of my own violin. As the saying goes.