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.

 

 

To John: a very happy, hot, and sunny Father’s day

As usual on a Sunday, I am trying to come up with witty, informative reading material that really captures my chosen subject. Unfortunately, it’s so hot, I’m struggling to think of anything remotely clever. Fortunately, my chosen subject has reassured me that he is not remotely clever. Introducing: husband to my mother, father to my stepbrothers*…my stepfather John!

When John first turned up in our lives, we were a single parent family – Mum, five year old me, one year old sister Rhian – living on benefits. My father, for all his apparently fine qualities, had not come up trumps, my earliest memories comprising me and my pregnant mother hiding in her locked bedroom after a particularly nasty fight.

A year on, and we were on a single parents week at a Christian holiday/retreat centre. I don’t remember much about those early stages, except that this man who Mum met during the week kept visiting. And sleeping in our living room. It’s been 19 years, and in retrospect, moving in with him was probably a hint that he was here to stay. Or we were.

I’ve told John several times that of all the dads I’ve had, he’s definitely in the top 50 per cent. He fits all the basic “dad” criteria to a tee. He makes predictable jokes. He makes them again. He sings out of tune. Over the years, he’s helped me and my sister with revision, job applications, and unwanted bits of food. Or food that he mistook for being unwanted. And, despite his earlier assurances, he’s actually pretty clever.

Plus, he’s had a role in many a family anecdote. Like when, pre-marriage, he took six year old me and two year old Rhian to the smallpox museum. Picture it: photos of hideously scarred, dying children everywhere, and a video all about a disease that killed everyone. Mum knew it hadn’t been a success when we came back white as a sheet, and unable to finish our dinner. It seems that John’s stepdad potential could only go up from there.

And of course, bedtime reading. It was John who got me reading people stories as well as animal ones, when he said he was going to read a surprise book. He did a good job of hiding the cover as well; I only got a split-second glimpse of Harry Potter and the Philosopher’s Stone before he started reading.

During my sister’s Enid Blyton phase, he had a real knack (or was it need?) when it came to livening up tales of pious schoolgirls with zany French teachers. Not satisfied with his old trick of inserting funny words, he had to give each character a badly-portrayed accent. Welsh? Afro-American? Dalek? You name it.

Yep, John is very much dad material. And I fully appreciate what he’s done for us. I’ve often thought it must take dedication to take on someone else’s kids and help raise them as your own. So I want to raise a glass to all dedicated fathers, and specifically those who take on the role, no matter how late in their children’s lives. Who better to teach me how to quickly predict a dad joke?

 

 

*one of whom features here

 

The pet lovers’ dreaded debate part 3: double standards

What bothers you about people’s attitudes towards animals? There are a million answers to this. Farms. Unethical breeding. Negligence. The internet is full of protests about these issues, and because they are bigger and more serious than what I’m blogging about, I should probably cover them myself one day. But for now, I’m coming back to an old pet hate (pun fully intended): cat prejudice and double standards.

First, hear me when I say this. I love cats. I relate to them. I mean, I don’t automatically bond with people I don’t know. And I don’t think they are better than dogs, because who are we to call one species “better” when, in the human world, most of us stand for equal rights?

People claim that cats control us. Plenty of cats do try to persuade you to feed them when they’re hungry just by staring at you and following you into the kitchen. But so do dogs. The reason we have to train dogs is so that they know who’s in charge. Do you see? Any pet can wrap you around its paw, if you spoil it. If you stick to a strict feeding schedule and don’t give in to your pet’s every whim, then they are not controlling you.

Also, believe it or not, cats are capable of being trained; it’s just that teamwork isn’t in their nature. Why judge them for this? I hated group projects at uni myself! If you reward a dog for learning something new, it will react as if it has successfully pleased its pack leader. If you reward a cat, it will react as it would to a successful hunt – it used its brain and got a tasty treat as a result.

Then there is scent marking. Dogs and cats do this in similar ways; one of them being physical contact. A dog will jump up at you, a cat will rub against you, and in doing so, both are claiming you as their own. Why do humans hug? For the same primitive reason. It helps secure a connection. People find this thought endearing in dogs, and like the idea that the dog is excited to see them. Why does a cat do it? Ask any cat hater, and they will claim cats are trying to own you, want to trip you, or are impatient to be fed.

If a dog bites a human, people will (correctly) insist it isn’t the dog’s fault, it’s the owner’s fault for training it wrongly (or not at all) or the other person’s fault for ignoring its body language. The same happens with a cat? Apparently cats are just nasty. People are quick to defend a dog’s flaws that were caused by human influence (or lack of), or biological nature, or are an unfair generalisation. And rightly so. Because these are vulnerable animals we are talking about. And cats are no different here.

Cats are not living for world domination, and to think so would be anthropomorphising them unrealistically based on cat prejudice hyped up by fiction. If any creature lives for world domination, it’s the homo sapiens. Cats simply live to survive as comfortably as possible. Don’t we all?

Any more thoughts on this issue? I may have covered them here or here. Or possibly even here, for cat/Asperger comparisons. Otherwise, fire away!

Bouncer’s usually the one to initiate our after-work catch up!

 

Part of a group

How do you feel in a group setting? Last month’s Ukraine trip was just one of many experiences that demonstrated how I respond to being with a lot of people. I hasten to add that it was definitely one of the more positive ones! But it did come with its challenges, and right now I’m expanding on a point I made last week.

While we were out sightseeing, one of our translators asked me why I didn’t talk much to anyone else. I was a bit lost for words. I had been talking to people. Thinking about it, however, I’d chatted to several people for a minute or two, but not really at length. Why?

All I can say to that is, this is usually the case in groups, and always has been. Yes, it’s Asperger related, but beyond that, I don’t know why, any better than anyone else. Autism experts would say something about me not reading non-verbal social cues. I say I’m being normal in my way, the others are being normal in their way, yet somehow I’m at the edge of the group.

To some extent, this is ok. I alternate between a little socialising, listening to everyone else’s conversations, and zoning out entirely. But if I want to really bond with people, it’s hard when there are so many of them! My best friendships have been built on one-to-one time in a quiet, socially safe environment, often when the two of us have something to do together.

Group situations are different. You’ve got lots of people to choose from. And they have lots of people – who are not you, and are probably way more charismatic –  to choose from. When there’s information for you all to take in, it’s going to get passed around, changed, and worded differently or incorrectly. When you put it like that, can you see why autistic people struggle?

When I joined the choir at uni, despite my love of music, my heart was never in it. I was invisible. I didn’t feel like I belonged. When I tried to explain my struggles to people in charge, they said I was doing fine because they hadn’t felt like they needed to help me with anything. At one point, we took part in a huge university choir competition in London. From about 4.30 am that morning to 2.30 am that night, I was surrounded by people, often to the point where I could barely move. There was a lot of waiting around, moving around, stuff happening all the time, and no-one explaining anything to me. I hated it.

But I’ve said it before, and I’ll say it again: my friends on the trip were great. They made sure I understood everything, they stopped me from getting lost, and some of them had a fair bit of quality time with me. And that’s basically what a group member on the spectrum needs.

Life of the party, me…

DISCLAIMER: not my photo

Next stop: Ukraine

You know when you have such an adventure filled time that you can’t wait to tell everyone about it? And when you get back and they ask, it’s like you’ve just developed travel memory loss? Yep. This is me right now.

And I still don’t know where to begin. So just sit back and watch, as I try to cram travel, stress, adventure, raccoons, toilets, friends, fun, prayer, culture, *deep breath* into one post.

To recap: as part of my Christian internship, I am doing a weekly discipleship course with other Christian interns. And last week, our leader was due to speak in churches in Kiev, Ukraine. Voila, my first mission trip.

If I’m honest, my attempts at being positive about the trip were wearing thin towards the big day. I find big groups a challenge. Airports even more so. What I hadn’t bargained for was having a panic attack just after take-off. Of all the places to be gripped by fear of the unknown, of vomiting publicly, of everything worrying me, it had to be thousands of feet above the ground, surrounded by people, with no way out.

Yet throughout the day, my friends cared. They prayed for me. Looked out for me. My friend Ruth stayed with me throughout the journey, and chatted to me when I felt bad again. I used to wonder how chatting could possibly calm an anxiety attack. I was wrong. It really takes the edge off.

Yes, being mildly autistic in a group of people exploring new territory was tough at times. I find it harder to form bonds in a group. I got fed up with needing help mixing, or understanding what was going on. I wanted to be on the same level as everyone else, but it wasn’t always possible.

You know what, though? I got the help I needed, and I’m fully grateful for it. Because that’s how a good group works, and I would do anything in return.

Besides, there was plenty to laugh at. Like the man with his pet raccoon*, who wouldn’t let one of my male friends take a picture, but was happy to take a selfie with a passing young lady. Or when Mary, who is Ukrainian, introduced me to Ukrainian public toilets: holes in the ground. I decided I’d rather wait for two hours.

In short, this trip saw me at my most exhausted, but there were times when I felt more exhilarated than I’d felt in a long time. I had late night, heartfelt conversations with the girls. I ran through sprinklers** like a fool with the others. I ate till I could burst. We laughed. We took photos. We were alive.

Last, but not least, we did what we came to do. We took part in church services. People at church got healed of physical pain. People on the streets got a chance to feel heard. Some believe, some don’t, but for me, the most important thing was showing them a bit of love.

In conclusion, I want to give my love and thanks. To Ruth, once again, and her dad, our leader, who was so patient with me whenever I was weary or confused. To our translators. To everyone who donated towards this trip. To my parents for their support. To the four friends who contacted me during the week to ask how I was. To certain people who helped me not get lost at the airport or the underground. To the interns whose house I stayed at the night before. You are all wonderful people!

 

*

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DISCLAIMER: the first and third photos aren’t mine

When I was 19

Guest article on depression by one of my closest friends:

‘When I was 19 years old, I made a friend called Kevin.

We first met as I was walking home. He called my name, a curious voice amongst the grey surroundings. When I turned, he made no move, but stood observing a little distance away.

He returned a few days later. This time there was a knock at the door, a light tapping that only I could hear. But there were no introductions. We spent the day sitting together in my living room, peacefully occupied with our own thoughts.

Our acquaintance continued for several weeks. We got to know each other: he learnt about my friends and family; I learnt that he disliked leaving my side.

It was curious how my friends never spoke to him. They noted his presence; I saw them watch him from afar. They asked after me, and still made plans. And although Kevin was never invited, he was always there, at every event and every party. As time passed he was with me more often than not – a distraction from priorities, who took me away from my friends to sit with him alone.

He showed me an island of his, a small, vicious crag of rock isolated by roaring wind and towering sea. We went for day trips, some sick lovers’ retreat; he revelled in the lonely violence of the place. He took me more and more, and it wasn’t until I looked up and saw my friends waving to me from the shore that I realised I had not returned for weeks. And even as I begged, he would not let me leave.

The mainland looked so beautiful from the island; I ached to go home. I recalled the sunlit meadows, misted forests, still water beneath a sky on fire. But as time went on, the memories dwindled. I could see the sun rising above the clifftops, but could not remember how it felt to sit beneath its rays. I could see the wind breathing across the grasslands, but could not remember how it felt across my face. Worst of all, I could see my friends waving, but could not remember how to wave back.

Time passed. I stopped living and simply existed. Kevin was always by my side; he didn’t leave once. We barely spoke. It’s no wonder he became bored of my presence, searching for more ways to entertain.

There are several ways of causing hurt; he used all of them.

I never really considered that I would ever hate to live. Now, my old life on the island was what filled my dreams. I wouldn’t have to go home; I wouldn’t have to see my friends. I could stay, on the island, with him forever. If only he would stop, I would gladly give up everything. Sleep only delayed the pain; and eventually every breath was sharp and every thought was scarred.

I thought that if I hurt myself, he would leave me alone. He was willing to wait. But even this caused a greater sorrow, spiralling like electricity across the mainland. A web of pain was forming, glowing nodes of orange, pulsing light surrounding me, my house, my friends’ houses. Every muscle I moved sent ripples far and wide.

Things had reached a climax when one day, I realised that Kevin was not directly by my side. A few days later, we were again apart. And a few days after that, and after that – and one day I felt a touch of warmth flit across my face; I turned and saw the island across the water.

Nowadays, I hardly see him. We meet occasionally as the months pass by, as I wander through a life worth living; and the clouds are sparse beneath the glorious sunshine.’

 

From barely functioning to melting down

When I’m somewhere outside my comfort zone – anywhere new, busy, or with a lot to remember – I will go into the mental equivalent of power saving mode. I keep my head down, remain on the sidelines, or wherever it’s quietest, and withdraw into my own head.

If I have an obligation to be in this place, I will do what I think is expected, but, though polite, will not be at my most sociable. Nor my most attentive. My brain is doing only what it has to. As soon as is socially acceptable, I will recharge in the seclusion of my own room, and start to feel more human pretty quickly.

Now turn it up a notch. I’ve been in such a place too long, or there are too many demands being made, or maybe I’m in a difficult situation with a person. At this point, even power saving mode is wearing thin. Until it becomes…meltdown mode.

What is a meltdown, anyway? It’s something people with autism experience. It’s something people with mental illnesses experience. It’s feeling something snap inside you and suddenly having to leave the room because you can’t take any more. It’s crying because of some minute trigger that unleashed festering negativity. It’s snapping irrationally at those nearest to you. It’s doing anything to shield your senses from the world around you. It’s being too stressed, bewildered, and unfocused to function. It’s…it’s…it’s…

Well, it’s lots of things really. And no two people melt down in the same way.

For me, meltdowns are mostly internal. I don’t have big, emotional outbursts, because it just isn’t in my nature. I feel that mental “snap” inside me, and I might cry, or try to escape, but usually I’m just stuck in a daze, with my mind in turmoil and my social skills gone. Outwardly, on the other hand, there’s little noticeable difference between that, and power saving. So it looks like I’m doing ok.

How do you deal with a meltdown anyway? Write down what it means for you, and the situations you might struggle with. Useful for showing to people for future reference, and can help you understand yourself better, too. When facing a high-stress environment – for me, it would be airports, very large train stations, or my graduation ceremony – plan when and where you could take a breather. Learn in advance what to expect from the occasion. Stick with someone who understands you well. And bring a book, or an ipod, or anything that helps you calm down.

Whichever coping methods you come up with, try to use them while power saving mode is still working. Because the more you are struggling, the harder it may be to communicate your needs. It’s not easy telling others about what feels like a weakness, especially one that the majority won’t have experienced. But the people around you have a right to know. And you know what? You have a right to not suffer in silence.