The challenges of change

People say there’s good change and bad change. A while back, I expanded on this. Some things should change, some things will inevitably change, some things shouldn’t change, and some things will never change. Sound about right?

This is definitely true in a broader sense, but at the time, I was actually thinking about people as individuals. People change all the time. Some refuse to budge when push comes to shove. Others make a conscious effort, and there’s a very fine line between putting on a show just to impress, and changing so that you grow and improve.

You’ve probably heard that people on the autistic spectrum – like me – struggle with “inflexible thinking”. In response, I’d say I’m a flexible thinker, and a less flexible doer. I’ve willingly dealt with, and sometimes even welcomed, something new. I don’t have a meltdown if one week has a slightly different schedule to most weeks. I’m wary of getting so stuck in a particular thought pattern that it’s impossible to see outside it. See? I can handle change.

But my parents would point out that, in spite of all that, I still find it hard. And actually, they have a point. If things are going to be different, I like to know about it in advance and prepare as much as necessary. Right now, post-internship, I’m at a bit of a crossroad. This past fortnight has had some rather unexpected ups and downs. On top of that, I’ve had one-to-one meetings with new people, job applications and an interview, and a new editorial role on De Montfort Uni‘s magazine, the Demon. I can’t deny, it’s all very unsettling.

I think the reason people like me struggle with change is because there is a lot we don’t understand that comes easily for others, and so we feel a strong need for our environment to make sense. When there’s a lot going on, and I’m always asking what’s happening, when, where, etc. it’s like I can’t see all that, and am feeling my way in order to get a picture of my current situation.

I suppose the main thing to understand about change is that it’s unavoidable. Also it’s hard to pinpoint any specific way of handling it when every situation is different. I guess if something new is coming up and you know it, prepare and learn, even if it means asking the same things more than once. New things that you know nothing about are harder, but they’re not always bad. When things do go wrong, be aware of your needs and emotional reactions, and think about how you are going to get through. As for good change, it might help to think about why it’s happening, or what good may result, and if you don’t know, even if it feels difficult, that’s ok.

 

Advertisements

Lonely in a crowd

Parties. Love them or hate them? If I know people who will be there, I’m happy to go. Once I’m there, I can expect one of the following outcomes. It’ll be a great bonding time with friends, and social energy well spent…or I could be watching everyone having fun together, wondering how they click so easily, and not knowing how to join in.

To start with, I have more friends now than I ever had growing up, and I’m so grateful for what they’ve done for me. But I’ve been to a few social occasions lately, and during one where I was watching the others talk, laugh, and have fun, it kind of hit me how lonely Asperger’s Syndrome can be. I can, and usually do, get on well with people individually, but it’s so frustrating still not knowing how to really get noticed in a group.

I mean, tripping over a step in front of over 10 people this summer got me noticed. But possibly not for the right reasons.

I’ve blogged about Asperger’s and groups. I’ve also, in a fit of uncharacteristic optimism, covered what’s good about the condition. What makes it so lonely at times?

Most of the time, I don’t even know what I’m not picking up on from other people. Experts would say non-verbal communication. Or lack of eye contact. Or needing alone time when it gets too draining. I know. I’ve heard it all before. Whatever it is, it can make people think I’m not interested. And that’s really hard.

You know the saying “three’s a crowd?” Couldn’t have said it better myself. Threes always make me anxious. No two members of the group will have the same relationship dynamics, and you can bet two people are closer to each other than the remaining one. Fair or not, it’s only natural, and I don’t know how not to be that awkward third person. At least if you feel invisible in a big group, it’s understandable when there are so many others to talk to. When you’re one of only two people for someone to bond with and they still prefer the other person? Dispiriting, to say the least.

One of my biggest insecurities – no matter how kind people are – is the thought of being the one who always needs help, but has nothing to contribute. You need help understanding what’s happening. You get confused by too much going on, or too many instructions. Occasionally you’ll say something inappropriate that seems logical to you. It’ll always take longer for you to learn to read people. I’ve heard these things over and over, and trust me, it would be an easier burden to bear if they weren’t true.

I know it all sounds a bit negative. But hey, we all get lonely, and sometimes the best way to reach out to others is to share your struggles. I don’t sugarcoat these things. Or exaggerate. Nor am I asking for special treatment. I’m just being real. And if you have similar worries, I hope this helps.

 

 

To my future employer…

My internship is over, and once again, I am fervently applying for jobs. I think of it as being like uni coursework, except you get either no feedback, or negative feedback, in response. Pretty dispiriting.

My parents advise me to mention on any job applications that I have Asperger’s, and to explain how that affects me. My former boss says to just mention it if the topic comes up naturally. And I do worry that mentioning it too much puts people off. But I also worry that if I don’t explain properly, people won’t understand. Which got me thinking: what do employers need to know?

Having Asperger’s does not stop me from being relational. I’m not allergic to people. I want customers/clients to get the best out of whatever I am helping to offer. I want my colleagues to have a good working day, and I love it when I make friends in the working environment. Basically, I care about the people I work with, and I will go the extra mile for them.

I thrive when I can work on something carefully and meticulously. I’m happy to do jobs most people find boring, if I know what to do. I want to to my job, and do it perfectly – whatever it is. If a job needs doing, and the expectations are clear, I will focus hard until it is done. Simple.

Being on the spectrum means I am less expressive. Sometimes I don’t come across as interested or enthusiastic as I feel, and I may not know how best to show it. I also find it harder to pick up on non verbal communication, and if I knew exactly what that was, then I wouldn’t find it so hard. I think I’m being normal, then somehow everyone around me just “gets” each other, and I’m left wondering what I’m missing.

I like to know what is happening, and what any plans are. Apparently more so than most people. If everything’s happening quickly, and lots of people are talking, I know I keep asking what’s happening, or what we’re about to do, and even if it seems repetitive, I really appreciate a clear explanation.

When explaining my struggles, the most important thing is understanding. If I need help, or something to be done differently, I will say so. For issues like the points above, however, the most helpful thing is to simply remember them, rather than thinking I’m weird or helpless.

Some pretty basic points here, but crucial too, I think. Looking for a job too? What would you add to the list? And if you’re already employed, is there anything you wish your employer or colleagues understood?

 

“Things Not To Say To An Autistic Person”- my reaction

If I had a pound for every time I read or hear the statements below, I wouldn’t be job searching…

Today I thought I’d take a different approach to usual and have a look at a video: BBC3’s “Things Not To Say To An Autistic Person” available here: https://www.youtube.com/watch?v=d69tTXOvRq4. It’s part of a series in which people in a social minority share with each other – and the viewers – what sort of things they constantly hear from people. And after watching the one about autism, I thought why not share my thoughts? So here are the statements covered.

“But you don’t look autistic!”

Can you tell me what an autistic person looks like? I’ll have a go. Human sized. Hair, mostly on the head. Two eyes. One mouth and nose. Four limbs, but only two are used for walking. I can’t really give much more detail, though, because no two autistic people are alike…

Autism isn’t a physical condition. In fact it’s not even one condition, and I’m well aware that those on the severe end of the spectrum may present as being obviously different. But it’s only their behaviour that shows it.

“What’s your special ability?”

The assumption that people like me have a special ability is, to be fair, loosely based on truth. It also implies that people on the spectrum have superhero alter egos. Which isn’t the case, because frankly, life’s not fair.

It is common for autistic people to have an above-average IQ, and an intense, detailed fascination with their area of expertise. I mean, not every five year old would know a polymorphic snake when they saw one. And yes, assuming someone is gifted is better than assuming that they’re dumb. But blatantly assuming anything can sound annoying, and anyway, it’s not always as simple as autistic people having one super-talent and struggling with everything else. Autistic obsessions may be rigid while they last, but they can change and overlap.

“Everyone’s a little bit autistic”

Nothing wrong with this statement exactly, but does everyone who coughs have a little bit of asthma?

“Autistic people don’t feel empathy

Let me stop you there. Many autistic people aren’t as expressive as neurotypicals. We don’t always know how to respond to people during immediate, face-to-face interaction, and yet somehow, we over-empathise. If someone I’m with is unhappy, it’s like the air is thick with it.

“You could be normal if you tried”

I don’t try. I just am. For me. Don’t even get me started on healing

“How would you describe autism?”

A hard question, but not necessarily an inappropriate one. Having Asperger’s, i.e. at the mild end of the spectrum, I’d say poor co-ordination, difficulty reading people, a mix of detailed and innovative, and overall a bummer, but also perfectly normal. Well, “normal.” If you want a lengthier description, you’ve got one right here.

“What is the best thing about autism?”

To be honest, it’s a nuisance. But hey, I can joke about lacking empathy or humour in a way that would be insulting coming from anyone else. I have life experiences, and an understanding of the world, that are apparently different from neurotypicals’. Plus, if I didn’t have it, I might not be writing this blog.

There you have it. Personally, I wouldn’t put a ban on those last two points, but other than that, please try to remember the issues touched upon. And while you’re at it, watch the video, and tell me what you think. How can one deal with these statements? Could they be replaced with something more appropriate?

Getting healed?!

A few weeks ago, a customer came into the shop, and, as customers often do, asked me a lot of questions at once that I was struggling to make sense of. When trying to get him to clarify what he wanted, I told him I have Asperger’s Syndrome, a form of autism, and sometimes communication is confusing for me. But alas, there is hope, fellow Aspies. Because according to this man…I could ask God to heal me!

My reaction, as a Christian, is this. I believe in praying. I believe that people can be healed. I also believe that, just because God can heal, it doesn’t mean that He should, or will. I have to say, though, I wish my immediate response had been that eloquent. What I actually did was falteringly explain that autism is not an illness to be cured, but rather a difference in the brain, and that implying otherwise can hurt. He got it in the end, and surrounding colleagues and customers were impressed. So clearly I did something right.

But then I thought to myself, no matter how many times I hear how important it is to embrace our differences, I do get frustrated. I do wish I didn’t need extra help. I’m often fed up with my struggles, yet I couldn’t help feeling offended at the notion that I should change. Am I just acting like a special snowflake?

I don’t know. But not every struggle is a problem that needs to be “cured”.

I recently had an interesting message exchange with a friend who, as we were chatting, was watching a documentary about children on medication for conditions like autism and ADHD. She asked me how I felt about that. Now, I respect people’s decisions here. It’s up to the individual. If medication proves more beneficial than not, then good for them. But I’m wary of people who treat Asperger’s as an illness, when it’s not caused by germs, or hormones, or bodily harm. So I gave her the following analogy.

Imagine a group of people, all from the same country, faced with someone from another country and who speaks a different language. Chances are, they are lonely. They want to communicate, but they find their limited vocabulary very frustrating. They might wish they were the same as everyone else, but should everyone be praying that they suddenly become British? Or American, or the nationality of your choice…

No. Of course not. It’s up to them to learn English (or whatever), and it’s up to the others to be patient with them. And it will always be their second language. But with enough learning and patience, they may speak fluently, and become a popular, respected group member. And they can bring to the table a language and a culture that everyone else barely knows about.

Do you get what I’m saying? In a similar way, learning differences can be a bummer. But they don’t have to stop you from flourishing. The trick is working through it, seeking support when you need it, and finding a way forward.

 

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.

 

 

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