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.

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Am I autistic, or do I have autism?

Am I a brunette, or do I have brown hair? Am I tall, or do I have long legs? You get the point. No? Ok, I’ll explain.

When talking about autism, some people prefer person-first language – that is, saying “people with autism” or “people who have autism”. They say that doing so identifies a person with autism as…well, a person first and foremost, and that their condition shouldn’t be the first thing that defines their identity.

Other people prefer to say “autistic people”, which is known as identity first language. They see it as being a part of their identity that shouldn’t be brushed to the sidelines as if it’s something to be ashamed of, and some autistic people feel that person-first language does just that.

This issue doesn’t just apply to autism, by the way. I’ve heard opinions on this from people with other social and learning differences, physical disabilities, and chronic illnesses. But having had no experiences in those departments, I’m going to focus on autism.

And on that note, what’s my take on this?

Honestly, it’s not something that ever occurred to me to have any strong feelings about. To me, they are just different ways of saying the same thing. If I’m talking about myself, or just generally, I will use whichever one pops into my head. Don’t get me wrong, if a person on the spectrum – or with any other condition – said they have a specific preference, I will respect that and use whichever way of phrasing they are more comfortable with. But I don’t want to be told by a non-autistic person how to describe myself.

To me, the exact phrasing someone uses isn’t as important as the bigger picture of how they treat me. Whether they talk to me like an adult or a child and whether they approach me with an open mind or preconceptions say more about how they see me than whether they say the A word first or second. Asperger’s Syndrome is a form of autism that is equally part of my identity and not all of it.

Besides, it doesn’t need to be mentioned every time you talk about me. I’ve heard people tell stories about their “autistic child” or their “friend with autism” in which the condition is of no significance. It’s one thing to mention it if it’s relevant to your story, but if not, I would rather just be known as “your child”* or “your friend.”

To conclude, I feel I should add that I do not see my stance as being any more right than anyone else’s. It’s just how I feel, and I think we should all be free to describe ourselves the way we want, without feeling like we have to conform to the same preference. I see both sides as being valid and personally feel disinclined to take either one. I am autistic. I have autism/Asperger’s. It’s a fact. But it doesn’t define me.

 

 

*If you are my mother or stepfather. Otherwise that would be creepy.

Is knowledge too powerful?

When I was 14, my parents – usually individually – and I often read together, and one particular book I remember reading with Mum was If Cats Could Fly. In hindsight, it sounds like a disaster waiting to happen – do we really want cats to be able to reach the top shelf of the fridge effortlessly? – but it actually had quite a profound theme.

Picture it: a couple of aliens who have just crash landed on Earth grant two cats the ability to fly. The cats have a heck of a time at first, but because they can go wherever they want now, it’s not long before they are exposed to harsh realities of the world such as factory farming and destruction of the environment. Not surprisingly, they quickly succumb to despair at knowing so much and being powerless to change anything.

What got me thinking about this was my participation in a toxic habit that is all too common in millenials: scrolling through Facebook. I was seeing all these posts and articles that seemed to serve no purpose but to stir up hate towards people of opposing views. Statements about what God apparently wants to happen regarding Brexit. Warnings against getting too friendly with LGBT people. Prejudice towards vegans. You get the picture.

We have more access to knowledge now than ever before. Thanks to the internet, it’s so much easier to spread awareness of issues that, up until now, people have been ignoring. We can make our voices heard, and get closer glimpses of other ways of thinking and living.

But of course, there are two sides to every coin. Now we are more vulnerable. Now it’s easier to tear each other apart over a simple disagreement about a trending topic. We can so easily become both perpetrators and victims of misinformation, because now, stories don’t have to be authentic to be made public. We read things that are toxic to our emotional wellbeing – from prejudiced articles on why people like me are sick to posts saying people in (insert minority) should just deal with it – and then we keep coming back for more.

Well, I do. No, I’m not proud of it.

Do you see the connection? Easy access to knowledge can be a great thing in many ways, but does it also expose us to the darker side of people and the world we live in? People complain that we have less freedom of speech than before, but I think the opposite is true. We have more means of expressing ourselves, and at a time when more people are being given a chance to be heard. And that’s where divisions arise.

If neurotypicals were the minority

A few years ago, I wrote a blog post about neurotypical people – people without autism or any learning difference, that is. It was satirical, it was perhaps a little patronising, and it gave a jokingly serious, article-style description of neurotypicals, mirroring many Asperger descriptions I had read. Not everybody got it though, thinking that I was describing an actual condition. I guess I need to up my game!

If neurotypicals were the minority, it would count as a condition. If they were the minority, we AS people would still have a hard time understanding them, but hey, as the majority, it would be easy to dismiss non-autistic tendencies as weird. If they were the minority, they would need to fight to be understood. So from years of observation, this is how I would explain neurotypical people.

• Fewer touch boundaries. As a person with Asperger’s, I’m very easily startled by touch, so physical affection is something I share with people I am already close to. For many neurotypicals, patting someone on the arm while talking, or moving in for a hug after one meeting is common bonding behaviour. They’re being kind, and with that in mind, I try to let it go. It got awkward at church the other year when a woman I’d briefly met appeared to be offering a handshake, but in fact was about to kiss me. If someone catches me unawares like that, I have to explain: “I’m sorry for any awkwardness, I’m autistic, I struggle to read body language and am easily startled by touch.”
• Not very structured. Many neurotypicals have an uncanny ability to understand what is happening and what is expected of them from vague information from more than one source, and passed around with a whole load of irrelevant details thrown into the mix. They then have no qualms about changing their plans at will without making it clear what the new situation is. Meanwhile, you’re doing your bit at the exact agreed time, only to be baffled when the rest of the plan has changed entirely. *Sigh*
• Reliant on eye contact, body language, and facial expressions for communication. Receiving presents as a child is testament to this, as I mentioned last time. I loved presents, couldn’t wait to open them, and always said thank you to the giver. But because I wasn’t bouncing off the walls with excitement, and looking them right in the eye the whole time, they were quick to think I didn’t like it.
• Good at physical skills. The physical co-ordination of some people is beyond me. While I can just about clap and sing at the same time, some people can do things like dance. Or go hiking on a rocky, uneven surface. Or kick a ball around while dodging other people. Or even do any of the above while giving me a weird look for being unable to keep up. Amazing…
• Have a high tolerance for background stimuli. Whenever I have to navigate a busy city, airport, or large train station, it is beyond helpful to have a neurotypical person with me, because they can lead the way without being mentally thrown off balance by crowds of people pushing by, loud noise, too many things to look at, too much information to try to remember…you get the idea.

So on that note, it’s worth remembering this: non-autistic traits may seem confusing. But they’re not a lesser way of being; people without autism have their strengths, and these are important. And no two neurotypicals are the same. They just don’t always communicate like we do, and even though that’s hard sometimes, we are all different and that’s ok. Now go out there and spread a bit of neurotypical understanding. After a lifetime of being surrounded by neurotypicals…I still have a lot to learn!

 

 

As a child at Christmas

It’s Christmas Day, and I’m sitting here wishing my brain would move as quickly as it was at 1:30 this morning. I don’t know why overtiredness manifests itself in the form of sleepless nights, and I don’t appreciate the irony. I thought I’d grown out of being unable to sleep on Christmas Eve. To be fair though, the cause of my Christmas Eve insomnia has shifted from the anticipation of presents to being walked on by attention-starved cats, replaying any recent social interaction in my head, questioning my own decisions, trying to think of a Christmas themed blog post… You get the idea.

After a few hours of this, it was that contrast that got me thinking about experiencing Christmas as a child and as an adult. I mean, we usually keep it pretty simple every year – lunch, presents, family time, TV – and that’s how I like it. But kids don’t do Christmas by halves. They go over the top with excitement, they want to show off their Christmas presents, and they can scarcely contain themselves.

Unless they’re on the autistic spectrum. Especially if they’re anything like me.

As a child, present etiquette was a bit of a mystery to me. I loved presents as much as the next child, and if someone gave me one, I knew I was happy about it. If I was feeling particularly on the ball, I even remembered to say thank you. So why were people so quick to assume I didn’t like it?

It was a while before I got it into my head that you have to look and sound excited when you receive a present, and look the giver right in the eye. A bit longer before I realised I didn’t do any of that. And even longer before I learned that having autism means that displaying body language comes no more naturally than reading it. But as a young adult, I think I’m getting it.

But hey, my lack of awareness back in the day proved advantageous for my mother. For a start, my present lists were basically the same every time. Soft toy, posh chocolates, plasticine. I was easily amused. And to cap it all, I was so unaware of the world around me, she could buy my presents right in front of me, and I would be none the wiser. As much as it was due to autism, my mum put it down to good parenting at the time.

Now the bar for her festive accomplishments has lowered. Now her biggest achievement is not tiring of the same joke year after year: handing me any distinctively rectangular present and telling me it’s a beachball. It seems that Mum was not content to leave it there this time, and so it was that among my presents I found – in a large rectangular box – one beachball. Brilliant.

Christmas performances have been a constant throughout my life. They’ve simply shifted from typical school/church nativities and carol services, to being “sixth narrator” in my primary school’s A Christmas Carol performance, to playing in the school orchestra/steel pan band in town, to singing almost in time with my current choir in the park.

As a child, I would need constant help keeping up with what was going on, with an adult or even a fellow child helping me focus, while I wondered when it would be finishing, so I could avail myself of any post-performance snacks. As an adult…no wait, nothing’s changed.

And so, as the Call the Midwife Christmas special draws ever nearer, I will wish you all the merriest of Christmases. Eat, drink, and be merry. May this be the start of a Christmas beachball trend! And a year of better sleeping.

Self care

I have had many conversations recently about the importance of self care. With friends struggling with their health, or who have had to support someone who is. With friends who have a demanding workload and are simply trying to find enough time to eat and sleep. Most of all with my mother and stepfather, who have been through a lot, taken on a lot, and still supported me a lot.

My life is about as full as it has ever been. I’ve got a job which, including the commute, keeps me out for 11 hours every weekday. I take Chinese evening classes on Thursdays. Choir on Saturdays. Gym, cooking, writing, and blogging when I have time. I’ve found a church where I belong, with a worship band I’m in once a month. Suffice it to say I’m very lucky indeed.

The thing is, though, it’s time consuming. Plus at work, however easier things are now, I still struggle with being an autistic person surrounded by neurotypicals. I also don’t get much time to either exercise or rest. In the limited amount of time I spend at home, I’m usually exhausted. And I’ve come to realise the importance of looking after my mind and body. Like so:

• Earlier bedtimes. Despite feeling uncool next to people my age who thrive on long nights out, I’m stricter with myself about this. I’m a light sleeper, I hate being overtired at work, and I have a 7:30am bus to catch. Now I try to get into my pyjamas at 9:30pm, with minimal screen time or work for 30-60 minutes beforehand. It’s a small difference, yet I’m much less sleepy in the afternoons.
• Healthier lunches. I’ve started having salad for 3 out of 5 work lunches, and at the risk of sounding like a snob, I genuinely enjoy it. I keep up the sandwiches and random snack lunches twice a week for the variety, but increasing my vegetable intake while reducing refined carbs and sugar does help me feel better in myself.
• My work routine. I have at least 2-3 scheduled water breaks (not counting lunch) during the day, especially the afternoon. It keeps me moving as well as drinking, and helps me stay alert.
• Emotional support. If I’m stressed or unhappy, I need a mix of alone time and emotional support. I keep a couple of hours to myself everyday regardless, and when I need to be heard, I’m lucky enough to be able to chat with my parents, or message a friend.
• Finding something in each week to look forward to. This is hopefully about as cliched as I’m going to get. Once summer was over and I passed my probation, every day and week felt just like the last one. Before I even realised I was doing it, I began thinking about each upcoming week, and what made it even a little special. One week it was visiting family. Another, it was a new book coming out. Next week, it’ll be the first day of advent. Bring on the countdown to Christmas!

As much as I feel like an old lady, trying to go to bed at 9:30, self care is a key part of staying healthy. If you look after your body, heart, and mind, you can give so much more of yourself to the things you do and the people you know. So to conclude, may I ask what do you do in the way of self care?

Autistic frustration

One of the many assumptions I’ve had people make about me is that I must be prone to anger outbursts. I don’t remember anyone saying it to my face, but I do remember Mum telling me about people who have thought that. Needless to say, this isn’t the case – Mum has always said if I was any less aggressive I’d go into a coma – but I realise it’s true for many people with Asperger’s and other forms of autism.

Outbursts are often listed as a symptom of autism, which, at first glance, makes sense. Plenty of children and adults experience this, whether due to frustration, sensory overload, stress, and many other things. But then I thought about some of the more basic signs and symptoms of autism in comparison, and I came to the conclusion that anger outbursts aren’t a direct symptom of autism. They’re an expression of built up frustration.

It sounds like the line between the two is very blurry. Put it like this: symptoms of autism are directly caused by differences in the brain. For example: overall high intelligence, but trouble reading faces and body language. Misinterpreting things people say. Different reactions to touch, and other sensory information. Fixation on topics of interest. I’ve reflected, rambled, and ranted about them often enough.

As I write this, I’m thinking about how it drives me mad when people see autism as a bad thing…while feeling fed up with it and wishing it wasn’t an issue. But in a way, that proves my point: autism doesn’t cause frustration. Having autism in a world full of – and made for – people who don’t does.

Autistic frustration is a range of issues in its own right. It comes from spending half your life having to explain yourself, and the other half needing people to explain themselves. It comes from having to work twice as hard just to keep up in social and academic settings made for neurotypical people. Having to grit your teeth when people talk down to you, or make assumptions about you, because you know they mean well, and you don’t want to hurt their feelings. Wanting to connect with your peers but lacking the know how. Then, just to top it all, not having the social skills to communicate all this.

Which, thinking about it, is partly why I blog: while my face-to-face people skills have improved, I still communicate more naturally through writing. It may feel like a chore at times, but it’s still what I do. Besides, it’s important to help people understand. I don’t expect miracles from other people, myself, or my writing. Accepting that sometimes things are different for me is what helps me be less self conscious. And if you can overcome self-consciousness, even if only a little way, you will find it easier to see beyond the negatives.