Life so far: growing up, autism, and 100 blog posts!

Years ago, I often thought about starting a blog. With my big dreams of becoming an author, it sounded like the sort of thing that all the high-flying writers are doing. Of course, it was just a crazy idea I had. Nothing serious. Right?

On receiving Blogging for Dummies for Christmas, I thought I’d at least show my appreciation by doing a quick summary of my world as a trial blog post. Now, four years and 99 posts later, my blog has definitely stood the test of time. It’s my way of reaching out, entertaining, and making my mark.

And this is my 100th post! So I thought I’d offer a much bigger summary of my life up until now.

Starting with Taipei, Taiwan, Wednesday 17th March 1993 at 1.13pm. My parents joke about how typical it was of me to come out at lunchtime. To which I say, how many people do YOU know who were born in the middle of the day, week, month, and academic year, on their due date?

People sometimes ask me what I remember about Taiwan. Kind of awkward because my earliest memories include me and my (British) mum hiding from my (Taiwanese) dad after they had been fighting. But hey, I also remember playing with our pets, walking through mountain scenery, and my 4th birthday party. It wasn’t all bad!

Just after said birthday, my pregnant mother and I hastily headed my grandparents’ way – Cam, Gloucestershire. My sister was born. I started school, and was happily oblivious to my teachers telling Mum how weird I was and blaming it on bad parenting. Then we found a council flat.

A year later, while we were on holiday, my now-stepdad made his debut. From then on, he kept turning up on our doorstep. And we on his. This went on for about three years, until he and Mum married, and we invaded his house for good. Did I mention what a cute bridesmaid I was?

Now in Loughborough, I ended up at a school that was actually competent, and hey presto, I was diagnosed with Asperger’s Syndrome. My response to the news? “Oh…can I have a piece of cheese?”

Secondary school pulled my head out of the clouds with a jolt. It was a scary world of social hierarchies, sport, and teachers with varying levels of empathy. I struggled with friendships. I struggled in classes. Most of all, I struggled to accept that autism was nothing to be ashamed of.

But gradually, I got involved with various social groups at church, and I finally started to make friends and open up about my difficulties. Meanwhile, I was studying animal care at Brooksby College. It comprised manhandling animals of every size and species, essays, poo, and overnight lambing. Pretty grim, but I passed with straight distinctions!

Because I wasn’t ready for uni afterwards, I did a couple of years of home study, and realised that my heart was in becoming an author, not a vet nurse. The second year proved eventful when my Grannie died of cancer, and I still regret not visiting more. But it was also the year I started at De Montfort University, studying Creative Writing and Journalism. It was challenging, and falling out with my friend when we tried living together was hard. That said, I learned more about writing than I ever had before, and I don’t regret it for a second.

And now, here I am, coming to the end of my Christian bookshop internship. It’s been a great year, with great people, and I can’t help wishing I had more time left. But few things in life are permanent, and as I reflect on my significant life events, I do wonder what the next one will be.

 

 

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Kind or patronising? Just ask

One of the things that I had no idea how to deal with at school was when people spoke to me as if I was a toddler. I would be muddling through a lesson with as much difficulty ease as the next kid. Who, if they weren’t ignoring me, would be trying to do stuff for me, explaining the simplest things, and telling the others “it’s not her fault she’s slow.” Or weak. I even had one person ask me – completely innocently – if I had brain damage. Seriously.

And it wasn’t just kids. I remember a teacher talking about our latest homework assignment, and mentioning how I’d been allowed to skip certain parts because they were too hard. Or classroom assistants who would follow me like a shadow in front of other kids, when all I needed was to ask a few extra questions.

What I found hard was knowing what to say. For the most part, I’d internalise the inner conflict between not wanting to offend and hating feeling patronised. Very occasionally I’d speak up, but the other person would act like I’d just karate chopped them! So much for not offending.

It’s hard to know where to draw the line here. If you have a disability or illness – whether physical or mental – you will probably have extra needs that require accommodation. And you don’t want to be ungrateful to someone who wants to help. Don’t wait until you feel like exploding. Just explain to them the nature of your needs – and be sure to add what you don’t need.

And if you are someone who wants to help, you might want to look at these pointers.

Don’t be afraid to ask your autistic/partially sighted/depressed (etc.) friend what sort of help they need. Do be discreet, especially if they are with other people – you don’t know how open they are about their needs, and they will appreciate you trying to learn without embarrassing them. One of my new discipleship course leaders took me aside recently to ask me about my Asperger’s and how it may show itself on the course. I gave a brief explanation, told her about my blog, and later brought in this letter. Both parties were happy.

Don’t make assumptions about their abilities. Any writing about their condition only describes exactly that – the condition. Not an individual who has it. Just give them the help they ask for. No more, no less. I find I’m more comfortable asking for help if I know it won’t make the other person act like I’m stuck in a burning building. Trying to help always comes from the best of intentions, but when repeatedly done unnecessarily, tells them “I don’t think you are capable.”

Note the difference between sympathy and pity. Pity is when people say “I feel so sorry for *insert name* because of that thing he/she has.” Sympathy is paying attention to what someone is actually struggling with, and offering moral support because you care. As for words like “cute”? Babies are cute. Pets are cute. Mature adult humans? Forget it!

And finally…remember that not every aspect, or even hardship, of a person’s life is linked to their condition. Special needs or not, anyone appreciates friendship from someone who takes them as they find them.

Dyspraxia

Safely away from the room full of over exuberant preschoolers!

Physical co-ordination, like too many things, has never been my strong point. This may have been obvious on my grandad‘s video of three year old me at Kindergarten in Taiwan, just sitting on a tricycle, fiddling with the parts but not zooming around the room with my peers. Or maybe later on, when Mum signed me up for ballet classes to improve my physical skills, only to spend weeks teaching me how to skip. Step, and hop, and repeat…

Actually, I’ve pretty much alluded to my dyspraxic tendencies here. Sport at school was my own hell on earth. Picture it: being surrounded by a field of people who may or may not be on your side running everywhere, shouting all at once, and a ball that you are supposed to be running after and moving in a certain direction, while being scolded for being so slow. Yes, it seems I am dyspraxic.

In general, I’m not a fan of self diagnosis. But most people on the autistic spectrum have dyspraxia. And my gross motor co-ordination* skills have always been sub average.

Which is basically what dyspraxia is. And when you already have to stretch your brain extra hard just to be nearly as socially skilled as most people, it can be a bummer to put up with. I didn’t learn to swim until I was nine. I needed parental help with learning to catch a ball. And there are some skills I never mastered: cycling, skipping with a rope, and walking on slippery surfaces.

By adulthood, if not adolescence, it often becomes less obvious. But even then, you may be aware of little ways in which you struggle. Like balancing. Or multitasking – yes, even if you are a woman! One thing I’ve noticed is that I tend to be slower on stairs (except the ones at home), especially when walking down. I can often make myself go faster, but it requires concentration.

Plus physical work. I spent my sixth form years (age 16 – 18) at Brooksby College studying animal care. This was a very hands-on course, 40% of which comprised farm practicals. Checking up on the new kittens was my favourite part. Trying to herd stampeding pigs or sheep into a confined space without getting laughed at by certain other students wasn’t. Similar to the dogs at a kennel and cattery I volunteered at. I put up with my boss yelling at me for two years before I decided I’d had enough.

I realise I’ve given a rather negative overview of dyspraxia. Truth be told, I’m just trying to explain how frustrating it can be, and to give others on the spectrum something to relate to. Besides, when I’m not wallowing in self-doubt, I know what I’m good at. I’m studious, physically fit, a careful thinker, detailed writer, and – despite the dyspraxia – a moderately competent violinist. Just not a dancer, footballer, acrobat or farmer. We all have limitations, but don’t let them stop you from recognising your talents.

Oh and I can also skip. Almost forgot that one.

 

 

*physical

I remember…

Among writers, it is a pretty well known fact that one of the best ways to beat writer’s block is by doing a writing prompt. You know, a little exercise that gets you writing about something. Anything. So tell me this: how is it that, while writing this post, I spend about an hour deciding how best to write the beginning?

Well, enough of that, and on to a simple exercise I learned during my first year at uni. If you’re trying to get your writing brain in gear, or even just bored, set yourself a time limit and begin with:

I remember…

Having a boy at secondary school call me a “ch*nky”, most likely to impress his mates. I don’t know if he was hoping to get lucky, but strangely, I don’t find casual racism to be much of a turn on.

Not understanding why Mum was being so violently sick in the months before my sister was born.

My grandparents’ cats coming back from the vet and me not knowing why the female was shaved on one side and the male under his tail.

Visiting the Nottingham Christmas Market with my secondary school as a reward for good behaviour, and one of the boys getting caught shoplifting.

Calling potato wedges “wedgies”.

My thirteenth birthday party, in which I must have eaten a ton of chocolate, party food, pancakes and birthday cake. Not surprisingly, the party ended with me feeling a little peaky.

And this was before the food hangover…

Going to my Friday night Year 10+ youth club, and the evening coming to an unceremonious halt when a boy’s arm went straight through a window. His arm was shredded and spurting blood, and he was definitely crying.

Overhearing him at school some time later bragging to other kids about how it was just a scratch and how he’d laughed throughout the whole thing.

Recovering from the trauma of my (then five year old) sister being rushed to hospital with a broken arm when I realised I could watch any video I wanted without negotiation.

Saying goodbye to Mum after hers and my stepdad’s wedding reception, and trying not to show how much I was going to miss her.

Mum and I moving from Taiwan to England when I was just four, and not understanding how final this was after so many holidays with my (English) grandparents.

That “first day of school” feeling on my first day at university.

Learning about the Black Death at school and being afraid to sleep with my lamp off that night.

The first time I had pizza when I was little, and thinking it was the best thing I’d ever tasted.

 

So there you go. Besides getting you writing, this is also a pretty entertaining group activity. Just get your heads down, write down as many random memories as possible, and exchange. How weird does it get? Why not have a go and get back to me?

 

 

Parents and the dreaded A word

Hello again, blog and readers. You’re probably not wondering why I’ve barely made an appearance lately. If you are, blame it on third year group projects (!!!). If not, why not? I’ve been struggling to keep to my principle of ‘one blog post on autism, one on something different’ but starting today, I am not wavering.

I’m also taking the liberty of actually writing about something that’s currently trending. Readers who know me well, no, my blog isn’t being hacked. Anyone else here been watching ‘The A Word’ on BBC1? It’s a six episode drama about a family getting their small son diagnosed with Asperger’s, it’s on every Tuesday at 9 starting last week, and it inspired me to write this post.

More specifically, it got me thinking about the parents’ reactions to the whole idea. Denial. Offence. Anger. Hopelessness. Because my mum had been only too relieved to have me diagnosed, all of the above reactions were somewhat hard for me to relate to. Yet for many people – particularly adults, who were born in a time where few things were diagnosed – the thought that an unfamiliar condition may be affecting a young person they are responsible for, can be too much to process.

But a diagnosis isn’t bad news. It’s an opportunity to understand what your child might be going through everyday, and how you can help them deal with it.

But they don’t act “autistic”

Firstly, autism is a word that refers to a range of conditions commonly known as the autistic spectrum. Someone might have severe learning difficulties with little to no use of language. Or they might be precocious in some areas, worryingly naive in others and generally a little odd. Maybe they make eye contact. Or show affection. Or have a sense of humour. Is this because they have learnt these behaviours or because they don’t fit every last stereotype? Either way, what you see may only be a tip of the iceberg that says little about their inner world.

How could you suggest such a thing?

If someone, particularly an expert, suggests that your child may need help, it is unlikely to be a jibe at you or the child. If anything, this is the first stage to paving a way forward. The staff at my first primary school insisted I was just “odd”, “slow” and “strange” from being in a single parent family. I was first diagnosed when a member of Autism Outreach had come to my second school to help another child and immediately noticed me!

I’m not labelling them!

I think these things are only as much of a label as people make them out to be. Naming the condition does not mean that your child will become a caricature of a stereotype. Not doing so doesn’t make it any less real. I spent my secondary school years trying to deny I was any different, and much of the time, I was miserable. Yet now, having Asperger’s is no more of a label than being a brunette with glasses. It doesn’t define me, but you can’t deny it’s true!

What sort of a life will they have?

You could ask this about anyone. One with trials and tribulations, and just enough fun times to make it worthwhile. And it will be a challenge, particularly as they grow older and start to care more. Some people will understand. Some might not. But the more your child and the people around them understand their condition, the better equipped they will be to handle it. And it’s never too early, or late, to start.

 

 

Coming out of the Asperger closet

When I was first diagnosed with Asperger’s Syndrome, my parents explained to me that I had a mild form of autism, and my brain was made just a little differently to everyone else’s. On hearing this, my mind was filled with a burning question. I pondered. I mused. And then I thought I would bite the bullet and ask outright…”can I have a piece of cheese?

Throughout primary school, I was dimly aware that I was different to everyone else. I spent most of my time alone. I had obsessive interests. Despite some negative experiences with other kids, my head was in the clouds and initially, my diagnosis didn’t change that.

Secondary school was a different world altogether. Suddenly children were less accepting and more interested in jostling for the top of the social hierarchy than looking out for a kid whose favourite conversation starter was cat breeds. Teachers were less understanding. I had a timetable and – worse – lesson locations to memorise. I made friends, then had no idea what to do when things went pear shaped. In short, I was vulnerable, and all too aware of it.

So from then on, I learned to hate the fact that I was different. I fought hard to form friendships, and often failed. As a result, I was afraid to talk about it to anyone because I knew I didn’t communicate well and was scared of being judged. I even compared telling people about my Asperger’s with talking about periods to a boy! And because they didn’t understand why I was different, people found me weird, stupid, or – and I quote – “boring”. Sound familiar? If I could reach out to everyone still stuck in this vicious circle, I would.

A few years on – the dreaded GCSE era – and things slowly changed. I got invited to a Christian youth event, and had one guy, now a good friend, take me aside and explain how having Asperger’s affected him, and that it was ok to have it. I wasn’t ready to open up to just anyone, but held on to that nonetheless. Several months later, something similar happened after church, when someone empathised with my difficulty with socialising, because she had Asperger’s. I began to talk about my own struggles, and from that day, I was able to explain to people about AS whenever the subject of social struggles came up in conversation. Six years later, and I’ve been wondering how people can’t bring themselves to talk about AS. Before remembering.

How do you tell people? Depends on the situation. If you are struggling in a social situation, just say: I have Asperger’s Syndrome, which makes it hard to read people/understand instructions/deal with change, blah blah blah. Want to explain what AS is? It is a condition that means a brain has more trouble reading people and understanding social interaction. Social dyslexia, if you like. And don’t feel pressured to tell or not tell. Just live your life and explain your condition when the need arises. Might seem hard, but hopefully it will become nothing more than another part of yourself that people discover.

That said, I still have AS based struggles, among other things, but hey, that’s what baby steps are all about (metaphorically). My message to those of you in the Asperger closet? There are people who understand, and people who don’t but are willing to try. You might be walking a different path, but sometimes that is the only way to educate the world. And the only way to go ahead with that is to start.

Me being a complete introvert and undiagnosed Aspie social butterfly at Kindergarten in Taiwan.

Autistic childhood stories

Over the years, I have discovered that nothing keeps a conversation going like a nice long recollection of childhood stories. Unfortunately this is rarely due to choice on my part, as it is apparently the most effective method for parents to get revenge for all the times you embarrass them as a small child. These days, it’s pretty much common knowledge that I had an odd fascination with theft as a small child, and would loudly ask Mum “Is it wrong to shoplift, Mummy?” in the middle of a busy supermarket. Not a Christmas will go by without the rest of my family having a good old chortle at the nativity book I wrote and illustrated in year two. I don’t know why I forgot to give the shepherds any clothes, or why I thought that everyone celebrated King Herod’s death by having a “party with cookies”. But hey ho, that’s childhood stories for you.

Autistic childhood stories can be a different kettle of fish. After much digging around in the loft yesterday, my mum found two whole boxfiles of stuff that had been written by my parents to teachers, and vice versa, trying to make sense of my eccentricities.

Even before I read it all, I realise that I may have come across as slightly strange the day my kindergarten teacher taught the rest of my class how to make clay pots. Not such an oddity in itself, except being the creative soul I was, I decided to make penguin feet instead. I don’t think my family will let me forget about the “Ascension” picture I did at Sunday school, where the disciples were pointing excitedly at a big fish I’d drawn in Lake Galilee, and not looking at the figure of Jesus stuck in a far corner of the page. Nor will I ever be allowed to forget the time I decided that a snowman would be the perfect illustration for an African bag I’d decorated during “Africa week” in year one.

Having a read through my old school reports, special needs reports, letters to and from school, etc put an end to any doubts about what a weird child I was. Some of it came flooding back to me, some of it I knew nothing about, some of it was too embarrassing for me to dwell on. It wasn’t until I started school that I let people call me “Grace” and not “Robert” (spelt “Robt”). Having intense autistic interests meant that telling people “I know all about cat breeds” was a perfectly logical way of introducing myself. In my mind, there was nothing strange about announcing “I had no idea corn snakes were polymorphic!” at a reptile exhibition, and the fact that I was only five was neither here nor there.

I was also a slightly obsessive loner, as shown by how I answered questions such as “what makes you happy?” with “I love anything to do with being alone”. One report recounts how my hearing was so sensitive I would cover my ears when too many people were talking, but not so sensitive that a fire alarm would evoke any reaction from me when I was engrossed in my work. In retrospect, I can almost understand why my earlier primary school teachers described me during teacher-parent meetings as “odd” and “strange”.

I guess one of the good things about being on the autistic spectrum is that, if your parents do tell such childhood stories to anyone who will listen, you can be fairly sure that at least yours won’t be anything like the sort you would hear about any normal child. I will have to try and remember this next time I get reminded that all my soft toys still had names, personalities and detailed family histories when I was nine. At the end of the day, it is what comes of being “special”…