Getting healed?! Further thoughts

A couple of years ago, back when I was an intern at a Christian bookshop, you may remember I had a customer who was dead set on asking God to cure me of Asperger’s. That’s right. I gently explained that it isn’t an illness, or a flaw, and that implying that there is something wrong with the way I am is actually pretty insulting. A crazy thought, I know, but I think I managed to get it across.

What first got me thinking back to this incident was the comments thread on an article I read about autism. People were going off on all sorts of tangents, and I don’t really remember what the article was about. The comment that got my attention was from someone who had a child on the severe end of the spectrum. They mentioned that their child was having a pretty tough time with autism, unable to communicate clearly, and in need of constant care. And their point was that when people talk about how autism is a key part of who they are that doesn’t need fixing, it is actually harmful to people like that child for whom it is nothing but a burden. Because they would have a better life without it.

Wow. That definitely got me questioning my perspective.

Which – in regards to myself – hasn’t changed. AS does mean I have frustrations that many people don’t have to deal with. But if I wasn’t autistic, I would be a different person.

It did, however, pose a question that had never occurred to me before. Autism isn’t actually one thing. It’s a wide spectrum of very different conditions. That much I know. When I explain to people I’m autistic, I’m aware that, to them, that could mean anything. So of course there are people who don’t know how to talk to me, and who are surprised when I don’t always need help. Then on the other end of the spectrum, you have people who constantly struggle in a world that doesn’t meet their needs at all, and who would change it if they could. Is it problematic to label so many different conditions with the same name?

But of course, it’s not even that simple, because whatever end of the spectrum someone falls on, there will be other – often external – factors contributing to their quality of life. A person with Asperger’s may have experienced so much loneliness and isolation growing up, that they would give anything to change. A severely autistic person, on the other hand, may have a pretty comfortable life with just the right support.

So it looks like my reflection on this issue is inconclusive, and I’m sorry if that’s unsatisfying. I also hope there was nothing patronising or condescending about anything I said. If so, I’m more than willing to edit this post. Mostly I just wanted to share a few thoughts I’d never had before, and see how other people feel about this. What are your opinions?

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Inspiration porn

Before I get to the point, don’t be fooled by the word “porn”. This is not that kind of blog! Now do read on.

In a recent issue of my writing magazine, I read an article about how to write about disabled characters sensibly. It covered several pretty good points – person first vs identity first language, don’t use slurs, make disabled characters as well rounded as non disabled characters – but I thought I’d look at one that got me thinking: disabled people being seen as inspiring for managing the simplest daily tasks. Or, as the magazine put it, inspiration porn.

For a start, I should probably differentiate between validating someone’s struggles and achievements, and inspiration porn. We all survive tough times, and accomplish things that we’re proud of, and chances are, we appreciate it when people understand our struggles and admire our achievements. I don’t know about other people with disabilities, but for me, being autistic doesn’t change this.

Then you see articles on the Internet about people with physical disabilities, learning differences, etc., depicting them as being an example to everyone just for getting through life with their condition. Maybe they’re shown doing a normal activity that may or may not be harder for them, leaving everyone amazed that they managed it at all. I remember people at school saying they felt sorry for me because of “that thing” I have. Or they need help or friendship, someone offers it, and suddenly that person is a saint. It seems that everything the disabled person does is either because of, or in spite of, their disability.

Now I understand these reactions are well meant. There are things that are harder to manage when you have a disability or illness. Showing kindness to someone who has one is a good thing. But there will be many things in a disabled person’s life that are just routine to them and/or are unrelated to their disability. We don’t exist solely to inspire others by managing these things. Like pity, showering someone in praise over the smallest thing implies that you don’t expect them to be that capable.

I remember I once touched upon a similar topic: being kind vs being patronising. I said that pity is feeling sorry for someone just because of the way they are, as if that makes them lesser. Sympathy is understanding what someone is going through and supporting them accordingly. Perhaps you could compare it to attitude towards race – I don’t want or need to be pitied or admired for being half Taiwanese. On the other hand, I’m sick to death of racist catcalls, and the more people understand why this bothers me, the better.

Do you see? Stories about disabled people making any kind of achievement may be heartwarming, but to truly appreciate the things someone has mastered, you have to get to know them like any other person.

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 skillsThe 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 stimuliWhenever 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, 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.

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.

Being included

My teenage years were quite a lonely time for me. I’m sure I’m not alone in this. I soon got used to sitting in the SEN* room during breaktimes because it was easier than being alone in a crowd of friendship groups. One or two people made the effort to talk to me, and I appreciated it, but mostly I had to put up with other people talking about social events I wasn’t invited to.

If you’re not reading this while listening to some sad violin music, then you should be.

This is one of many struggles for young people on the autistic spectrum. Despite the “unemotional” stereotype, many of us are weighed down by the need for intimacy but difficulty in connecting. Since secondary school, things have improved significantly for me, give or take a few bumps along the way, but when non-verbal language isn’t your forte, sometimes it’s as if people forget you exist.

But while the stereotype that we don’t care about people is usually untrue, it is true that people with Asperger’s can find social events overwhelming. I was reflecting on this recently; I love feeling like I belong, and that people want to spend time with me. Sometimes, however, I get invited to social events where I don’t really know anyone properly, the activity is something I find hard, or I’m already feeling drained. Then if I say no, I inwardly scold myself for being ungrateful when social isolation used to be a real problem for me. If I get left out, I feel lonely. If people try to include me, I shy away in favour of being alone. Right?

The fact is, I always appreciate any attempts to help me feel included, even if I’m not front-and-centre at every social event. A bit like how a person in a wheelchair may want to be as involved as the next person, but might be reluctant to agree to go on a hike. Besides, I’ve been to a fair few events outside of my comfort zone, and actually ended up enjoying them – a few years ago, I wouldn’t be seen dead in a tent, for example! I just like to know that I’ll have at least one close friend I can stick with who understands autism, and opportunities for quiet time.

So if you’re not sure how someone on the spectrum feels about being invited to something, it doesn’t hurt to ask. They may say no, but if they’ve repeatedly felt left out in the past, they may still want to know that they were thought of.

 

*Special Educational Needs

 

A sudden improvement, and a blogging update

Last post, I was a little bit at the end of my tether. My work was teetering on the rocks, and I was feeling like a bit of a let-down. So I tried to remember my usual coping mechanisms for stress, and to make myself feel more productive, I wrote a slightly cliched blog post about them. Oh and I also prayed. A lot.

In the fortnight since then, my faith in myself and the power of prayer has been restored. Tentatively. Last week, the end of my probation was fast approaching, and was mainly hinging on my speed and accuracy during a certain task. Miraculously, with a target meeting technique I’d thought of but never tried, I did it. Long story short, my boss was pleased with how quickly I’d improved, and has extended my probation period by three months. Woo!

Right now, I’m hoping that things will keep looking up, and that this isn’t just a one off. I can’t help wishing that autistic miscommunication wasn’t an issue, and that I could have passed the first time just like anyone else. But my parents think that people on the autistic spectrum should be entitled to a longer trial, and to be honest, I’m just grateful to have got as far as I have.

I mean, this past fortnight has gone better than I dared hope, and now the pressure is less intense, I can feel the difference physically as well as emotionally. This improvement, hasn’t come without its cost, however, and over the past month or so, I have sometimes had to resort to going in even earlier – meaning getting the bus – at 7.07am, then getting home nearly 12 hours later and revising anything I still haven’t conquered. On the plus side, I have taught myself how to do Excel formulas! VLOOKUP, anyone? On the minus side, I am exhausted.

Which brings me onto a quick word about blogging. When I started my Facebook page (https://www.facebook.com/unwrittengrace/?ref=br_rs), I pledged to write a blog post every week, give or take the occasional break. I started doing it every Sunday. Then recently, I switched to Saturday. Then every other Saturday. Now it’s getting tricky. I’m commuting and working dawn till dusk every weekday and I’m juggling choir, the gym, church and its worship band in between. And now, all my Saturdays are completely booked up until August.

I’m not going to give up my blog unless I give up breathing, but right now, finding a slot for it is about as easy as finding a bus on a bank holiday. If I can stick to the two week regime, I will. Otherwise, I may blog on a free weekday evening. I may blog on a Saturday or a Sunday. I may revert back to my old habit of blogging on some random day every month or so. I’m unlikely to keep it this way in the long term, but for now, so be it.