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

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Dear diary…

“Have just had my toughest experience ever: Mum sitting on me, squeezing my blackheads, with Rhian looking on!”

“Sometimes I wish time wouldn’t drag so, especially after the Easter hols…” 

Is this normal writing for a 13 year old?

My journals and I go back a very long way. Even as a kid, I loved the feeling of having a fresh new notebook, which I could decorate as frivolously as I wanted, before complaining to it about my life. And let’s face it, when you’re a teenager – and an autistic one trying not to be eaten alive by non-autistic ones, at that – there is a lot to complain about.

Actually, my first diary was more of a travel log, three days before I turned 11, just before adolescence became an issue. We were en route to New Zealand, and I was not letting a moment of our upcoming adventure go to waste. Amid jetlag from hell, day trips of a lifetime, and hours of travel by land, sea, and air, I was determined to write down everything we did. I don’t know why I wrote as if I was addressing the rest of my class at school (why the heck would they care how many bedrooms our third motel had?), but that aside, I’m glad I did it.

Since then, my journals have evolved considerably, and have seen me through nearly a decade of teenage angst, followed by my attempts at adulthood. Journaling is my main way of keeping myself writing every few days, and a testament to what a nerd I am is how I feel like I have a different relationship with each one, depending on a number of factors. Like how often I wrote. Or what stage of life I was at. Or how much written self-reflection I did. It makes me feel pretentious, putting it like that, but it’s true.

Through keeping it up, give or take a few slips, I’ve definitely benefitted a lot from journaling. For a start, it helps me remember. I love laughing at my old diaries! It also helps me regulate my thoughts and emotions, making them less overwhelming when I can see them on paper. I’ve written down hard learned life lessons, I’ve made important decisions through brainstorming, I’ve poured out my heart about many a difficult situation, and instantly felt calmer.

Most recently, I’ve come to realise that writing a diary has helped me be more honest with myself, because I can get my thoughts and feeling out without being heard. Or maybe practise getting them out until I’m ready for them to be heard. Sometimes I don’t feel like it, other times I get started and don’t stop for ages. Either way, it feels like a constructive habit, and if it keeps me writing and learning, long may it continue!

My diaries, minus my current one, two pocket notebooks, and a wad of cat shaped post it notes. Starting with my neon travel log, going clockwise, and finishing in the middle.

 

Autistic insecurity

Isn’t it interesting how our personal struggles grow and change with us? So often, I see Facebook posts about how much simpler life was when the most stressful thing was running out of colouring pencils. Or how Year 7* kids have no idea what real stress is. But our worries are no less real in the moment just because there may be worse to come, or there are others with bigger problems. A common feature of Asperger’s Syndrome is seemingly irrational anxiety over any potentially negative situation. So, as an Aspie myself, I thought I’d reflect on my own experiences here.

For a start, children with AS can sometimes have a very black-and-white understanding of the world, which may be particularly noticeable in their understanding of what is safe, and what isn’t. Most people are aware that too much sugar is bad for you, and hey, wouldn’t life be easier if more children understood this! But what do you do when your child is afraid to eat even a single sweet for fear of getting fat or feeling sick?

Thankfully, I’ve long since set myself a limit. No more than the equivalent of two moderate portions of dessert in a day. Maximum. It really pays to know your capacity.

In a similar way, you could say it’s healthy to have an aversion to germs and sickness. What is possibly less healthy is to have an anxiety attack whenever you – or even someone else – starts feeling ill. Or to be afraid of food that had even the slightest chance of becoming contaminated. You know, like when fruit gets bruised, or perishable food is a day past its sell-by-date.

As we start to mature, we often tend to worry less about the physical world, and more about problems with other people. I’ve always found conflict a struggle, and I think this has evolved from Mum having to skip parts in my Pingu storybooks where anyone got cross, to me soaking up other people’s negative emotions and not wanting to make things worse. I have improved – I want to assert my opinions, or say no, and I’m more likely to now – but old habits die hard.

Besides, social situations can cause a lot of anxiety for people like me, because we’re so afraid of making mistakes that we couldn’t have foreseen. In a big group of people, it’s easier to keep a low profile because that way, at least you know where you are with everyone else. For me, groups of three are the worst. So often, the other two will hit it off really quickly, and I just don’t know how to keep up.

Living in a world where socially skilled people come out on top can create a strong desire to prove oneself – if not socially, then intellectually. I’m fighting despair when it comes to all the job rejections I’ve had – how do I know employers don’t find AS to be a social turn-off? I’ve always wanted to be a writer, and autism awareness is a noble cause. But, if I’m honest, my ambition does come from a need to have something to aim for. Because we, as people, need to find meaning in something, and maybe our best chance to prove ourselves is by pursuing something important to us.

 

 

 

*aged 11-12 years

Rhian, a babby at Christmas

Yes. That is something I wrote – and illustrated – on a piece of paper, when I was little and my sister was a baby.

My sister, commonly known as Rhian, Rhiazza, Rhi Rhi, and by one of our uncles, Rhajazzle, had to come into the world in the thick of our family drama, three months after our arrival in England as a single parent family. I don’t think our early aquaintance made much of an impression on me. The following summary of Mum’s return from the hospital is testament to this:

Me: Where’s Rhian?

Mum (reveals the newborn baby in her arms): Here

Me: Oh (wanders off)

To begin with, I like to think I did a good job of asserting my authority as the official Big Sister. I had to; Rhian had this really annoying tendency to get snot or dribble on my toys. When you think about it, making her promise not to before letting her play with them was a very reasonable solution.

Rhian was not a soul to be tamed, however, and my days of being the dominant sibling were short lived. Once she was old enough to play with me, I had control of most of the toys, but she was fully in charge of what happened to them. In an argument, she was a force to be reckoned with, and as an overly sensitive autistic child, her tantrums used to terrify me. At one point, I kept crying that I felt “unforgiven!”, and Mum, in a fit of uncharacteristic naivety, asked Rhian, “you do love your sister, don’t you?” Cue a big “NO!” from Rhian, and further floods of tears from me.

She still hasn’t forgiven me for…whatever it was, by the way. I have asked.

For the most part, though, she was a fair minded and considerate younger sibling. When Mum married John, Rhian, who had decided she was first in line to inherit the wedding dress, very kindly said I could borrow it if I ever got married. When we went downstairs for breakfast, I was apparently allowed to go first on my birthday. She also showed a lot of interest in my development; I distinctly remember overhearing her telling our parents how much better I was at eating my crusts.

As we shifted into adolescence, I don’t think much changed except that I was firmer about not wanting to play with her, and after a while she lost interest anyway. Suddenly, wanting me to play was replaced by wanting me to read extracts of my diary to her. Or making me play Super Mario Bros on her Nintendo DS because I was so entertainingly bad. I did have to take cover many a time when John had to help her through exam revision and things got a little heated, but hey, at least I was no longer first in the firing line.

One thing Rhian doesn’t tire of is seeing how far she can challenge me emotionally. Her becoming life-threateningly ill in hospital in September was her most successful attempt yet. Having been turned away from A & E twice with what was dismissed as muscle pain, Mum forced the medics to take her seriously, and she was diagnosed with aggressive pneumonia, pulmonary embolism, pleurisy, and pleural empyema with one collapsed lung. She was in agonising pain – and close to death – to start with. Yet when I visited, she was well enough to roll her eyes at me for fussing, and complain about being in a room full of old ladies. Definitely on the mend.

And now, as a third year theatre student, she is in her first professional show, as Princess Tiger Lilly in a pantomime* production of Peter Pan. Three months ago, I’d accepted this would be a miracle. Now she’s dodging the evil Captain Hook, while accepting fanmail from small children (!!!). Does it get any better than this?

Rhian, accept this 700 word long fanmail from one proud big sister. And Merry Christmas!

 

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Us as bridesmaids following our parents’ wedding

 

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At the hospital

 

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*Non-British readers: a pantomime is a British Christmas tradition that is a show full of slapstick, crossdressing, song-and-dance, and audience participation. Loosely based on famous fairy tales and contains more pop culture references than you would think could be crammed into two or three hours.

My moments of shame

Has anyone ever successfully cracked an egg by tapping it with a spoon without having to mop it off the table, the floor, and their clothes? Asking for a friend.

Most people, at some point, take a moment to wonder exactly how things will be for them by this time in ten years/one year/one week/tomorrow. Sometimes I take a step further, and wonder what cringe-worthy anecdotes have yet to happen? I’ve already got too many to remember, but thankfully, my mother has a memory like an elephant when it comes to things like this, and we decided that some of them were too juicy not to share on the internet. Enjoy! But don’t laugh too much.

For a start, here’s one I’d nearly forgotten about. A few years ago, we were just having our kitchen re-painted when we had a student knock on our door asking a favour. To explain the mess, I may have told him we were “having the painters in.” Not heard that euphemism? Go and look it up…

And that time in my then-violin teacher’s car, aged nine or ten, that I still haven’t lived down. I was with a bunch of her other students, on our way to an exam rehearsal, and I was definitely starting to outgrow travel sickness. So when the car jolted…and swerved…and sped up at random…etc., no way was I going to sink so low as to ask to get out for some air. Then I threw up all over the boy next to me. When I got home, my clothes and the car stinking to high heaven, I tried to tell everyone that “someone was sick.” And let’s face it, I wasn’t lying!

There have also been times when I have actually been a danger to myself. Most notably, during a secondary school residential trip. We were having breakfast in the hotel, and not only did I not see the sign saying not to put croissants in the toaster oven, I also had no idea that pastry is so flammable. The unfortunate toaster and its contents went up in flames, and the last I saw of it as I made myself scarce was my teacher whacking a towel on it.

And of course, among Mum’s personal favourites, childhood stories. I feel like she hasn’t got over every supermarket trip in which I loudly asked things like “Are we going to shoplift? Is it wrong to steal? How do people shoplift?” Or told any shop assistant we spoke to – in detail – about my parents’ recent divorce. Our supermarket, by the way, had a large sign above the door: “Thank you for shopping. County.” Always a precocious child, I pronounced the last word as “country.” But without the “r” sound…

Apparently, I’m to blame for whenever Mum embarrasses me; after all, it’s only payback for every time I pulled my knickers down in front of people as a toddler. Or insisted on going out with string around my neck so I could be a dog on a lead. But worst of all was when she and John were engaged. Being little, I had no qualms about enquiring about her personal life. And so in my mind, it was perfectly acceptable to ask – in public – “Is John going to s*x you when you’re married, Mummy?”

These days whenever that story comes up, my parents invariably joke about John determining Mum’s gender on their wedding day. In response, I remind myself that embarrassment is to be ridden out like any other emotional discomfort, hold my head high, and carry on with my life. Because why give them the satisfaction of succumbing to shame and being unable to laugh at myself?

What scares me?

My childhood, as some of you know, got off to an interesting start. But there is one early memory that spooked me deeply. It left me a quivering wreck, and has stayed with me to this day. It was a scene of carnage and destruction. It was the day Thomas the Tank Engine crashed through someone’s house. On TV. Yeah.

As you can see, I had a sensitive disposition as a child, which, in many ways, hasn’t fully left me. I’ve had several irrational fears throughout my life. Weirdly, Halloween has never been among them. I’ve never been an avid fan of it – my family as a whole are not interested – but it has inspired me to reflect on the things that have scared me at some point. Before you read any further, don’t judge me.

After Thomas, my next fear was anything that made a loud bang. Balloons, party poppers, and I think at one point even Christmas crackers. My mum wonders if it has anything to do with arriving at a party – still shaken after a nasty, pre-divorce fight between my parents – at the precise moment everyone in the room let off a load of party poppers.

My most intense fear – mercifully no longer the case – was probably fireworks. I remember being about six, and attending some kind of outdoor entertainment. Without warning, the sky exploded with hundreds of the damn things, and I remember screaming, trying to run, and spending the rest of the evening buried under a blanket, crying. Mum remembers a similar occasion when there was an unexpected display during some late night shopping we were doing. I panicked, fled, ran across the road, ran into the nearby supermarket, and was completely unreachable.

At first, even being indoors didn’t help, and it was with Mum’s patience that I slowly became more able to watch fireworks out of the window, and later, step outside the flat with them going off in the distance.

Another weird thing I struggled with as a kid was escalators. In my defence, why would I trust a surface that moves beneath my feet? Similarly, I was also afraid of walking on anything slippery – and still am, if I’m honest. This is most likely my dyspraxia manifesting itself, but I sometimes put it down to trying rollerblading, falling over, and sinking my teeth into my bottom lip. Yowzers.

I like to think that as a young adult, I’ve become less fearful. I mean, I’m less scared of spiders than I used to be. I can tolerate the occasional small/thin legged one in the same room. But there are spiders, and then there are the huge, hairy tarantula clones that randomly appear in the bath, come summer and autumn. Not my cup of tea in the slightest.

Lastly, one that I’m not proud of: vomiting. As a child, I was terrified of illness in general. If someone at school started feeling sick, I’d have an anxiety attack. I wouldn’t eat food that was even slightly old, or at risk of exposure to germs. Ironically, I would get so worried about getting ill, I would start feeling ill. Which then worried me sick. Pun intended.

Nowadays, I’ve come to accept that illness is inevitable, an unlikely occurrence, and usually short-lived. Regarding specifically vomiting related illnesses, I’ve been working on that over the years. But I will say this for myself: it was my fear of stomach bugs that motivated me to aim for five fruits and veggies a day, to give my immune system a good fighting chance. Wouldn’t you call it a blessing in disguise?

To Mum: surprise!

You know that awkward moment when you’re struggling to write a surprise blog post, but the person you usually ask for advice is the central character of said post? Yeah. It’s hard, isn’t it? So without further ado, let me introduce…you guessed it, my mother!

For starters, my mum has many names to choose from, the most common ones being Helen, Hez, Hezza, and, according to her Sainsbury’s reward cards, Melen* (my personal favourite). She spent her teen years at ballet school, then worked for several more years in Taiwan, where she met my father. Now back in England and married to my stepdad, she teaches Pilates and is training to be a counsellor. Long story short.

One of Mum’s many achievements in life is to produce two children who look nothing like her. Given this fact, and my father’s shenanigans with other women, I have asked her if she’s sure I’m not some other woman’s child. For some reason, she keeps insisting I’m hers, and refuses to believe otherwise. Almost as if my logic is flawed…

She also never tires of talking about what a huge baby I was, often completely at random. Having recently had my 24th birthday, this subject has been particularly high on the agenda. But given that I’d forget if it was mentioned on anything less than a daily basis, this is probably character building for me.

To this day, Mum still has a collection of letters I posted under her door as a small child. Such as “Dear Mummy, are you sorry that I hurt my knee?” And “Dear Mummy, I am sorry that the book got broken. Maybe we can fix it somehow.” And this classic from Year 1 at school: “My mummy is nice and kind and pretty and firm when me and my sister are bad. Sometimes my sister is bad, but I am good most of the time.” I always was destined to be a writer…

Apparently one of the perks of being a mother is the thrill of embarrassing your children. Personally I don’t buy the excuse that it’s revenge for every time your kids publicly embarrass you. But then her favourite weapon is stories of all those times. She also likes trying to be cool with words like “lol”, “lmao”, “grooveh” and “in with da kids”. Which she does to drive my sister crazy “just for the lolz.”

But for all her eccentricities, my mum fits all the important mum criteria. Throughout divorce, living on benefits, school struggles, Grannie dying, and the trials and tribulations of growing up, she has been there. Loved me and my sister. Fed us properly. Given us a good life. And never let us down. Well, unless you count the time she wasn’t sorry I hurt my knee.

Melen Mum, I will just say this for you. I love you. Oh, and happy Mother’s Day.

 

 

 

*Whoever created those cards must have looked at her signature, wondered to themselves whether the first letter was an H or an M, and decided that “Melen” was the most likely option.