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.

Advertisements

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

 

Communication confusion

If someone were to ask me to briefly summarise Asperger’s Syndrome – not that they often do – I would put it like this:

– Difficulty reading faces and body language
– Difficulty interpreting things people say, especially instructions
– Poor physical skills
– Above average IQ
– Detailed long term memory
– Good at learning – and correctly using – spoken language

But in a specific situation where I have misunderstood something and fallen short of expectations, I can’t explain what I’m confused about, or what went wrong. Other people will ask me why I struggled with something that they probably see as blindingly obvious, and so often I’m left feeling stupid because I just can’t explain.

Often it’s the same with smaller, more mundane things. Why do you not join in with the group conversation? Why are you so easily startled? Why do you still need help finding your way there? In response, it would be so easy for me to reply: How do you find so many things to say to all those people? Why aren’t you startled when someone behind you pats you on the shoulder? How can you memorise a route you’ve only taken once while following other people? But these aren’t answers, because – apart from “I’m autistic” – I don’t have any.

In these situations, people asking about Asperger’s is fair enough. The hard part is answering those questions. How do you explain the way you are? It’s like trying to explain what your own accent sounds like! And when people expect you to communicate why you’ve misunderstood someone, the irony is that you have a communication disorder, and can’t explain any better than they can. Because part of being autistic is struggling to see how you come across compared with others.

One of the things I find hardest is unspoken expectations. Despite the autism stereotype, empathy has never been a struggle, and I have even learned to use it to pinpoint people’s emotional needs. But when I’m in a situation where there’s pressure to perform well – practically or socially – and pick up things that haven’t been explained, I’m completely lost without clear guidance on how to manage the situation.

And that’s not to say that AS renders you incapable of communication. We just process things differently, and who’s to say “differently” means “worse” anyway? We take in information in a concrete, logical manner, accompanied with a lot of careful thought, and in a world where most people instinctively know what’s expected when given ambiguous information, we are in a minority. So while we power through that world, and keep honing our non-native neurotypical* language skills, please bear with us!

 

 

*Non-autistic

Having a joke

Some years ago, I shared a funny video on Facebook about preconceptions autistic people have to deal with. “Can you count the handful of toothpicks I just dropped?” “Are you like Rain Man?” “Have you tried dolphin therapy?” You know, the usual. A friend of mine commented – not entirely seriously – “But Grace, people with autism can’t find things funny…” To which I replied “Of course not, what was I thinking? I’d better get back to counting my toothpick collection!”

My sense of humour often catches people by surprise. Which I can understand; I’m a gentle, fairly introverted young woman on the autistic spectrum, someone will make a joke, then before they know it, I’m explaining to them that my seemingly serious reaction was, in fact, sarcasm. When someone I’m with is being silly, I don’t laugh at them, I act like I am silently judging them. When I do or say something silly, I will make a deliberately transparent attempt to act like nothing happened. Or I will just pretend to think I did a brilliant job of whatever I was trying to do.

Actually, as you may have noticed, many of my jokes are about how autistic people can’t make jokes. I would say that one never grows old, but how can a joke grow old when you can’t even make one in the first place? And I did it again…

People with Asperger’s, and other forms of autism, are known for not understanding humour. I should be careful to not dismiss this as a stereotype, because I’m aware that many people on the spectrum take longer to learn things like that. We instinctively rely on spoken language for communication, and sarcasm goes directly against everything about communication that we try so hard to remember. The words say one thing, the voice says another, and somehow people find it funny. When you dissect it like that, it sounds far from logical.

Personally, I see humour as being one of those things that can take longer to learn, but isn’t impossible. I’m not entirely sure how I picked it up. I feel like I’ve developed the ability to see the funny side of a silly, or ironic, situation. I’ve not only learned how to recognise dry, deadpan remarks about life, I like to think I’ve perfected the art of it in my own way. Yet even now, I occasionally struggle. If someone says something that could, very plausibly, be true, I do get confused, particularly when I’m already overloaded. Or maybe I know someone is making a joke, but I don’t know how best to respond.

People like someone who can laugh at themselves, and in situations like that, if you can gently make fun of your own awkwardness, you can smooth things over. A lot of the time, though, perhaps it’s best to just explain that you have Asperger’s and you don’t always recognise jokes and/or know how to respond. But if you are well used to joking with others, and tired of people assuming otherwise, you have to laugh at the irony of them trying to wind you up thinking jokes are beyond you while not noticing you sarcastically playing along with it. Because few things in life are more satisfying than beating other people at their own game.

The best you can give

When I play my violin at church, there are days when I pick it up and the music just comes naturally. I can sight read, play by ear, read guitar music, no problem. My debut at a new church worship band at the Maundy Thursday evening service, however, was one of many days in which I misread the music, kept hitting the wrong notes, and couldn’t harmonise to save my life. I was tired and anxious, and although I got a fair few compliments, I still felt unsatisfied with my performance.

At church, as with many areas of life, I’m often in awe of people who bring everyone together effortlessly, or give a flawless talk, or are more musically gifted, or…you get the idea. I have watched several friends take a lead role in a service, or other event, and afterwards, reassured them that they did it so well, and that no-one would have noticed they were struggling. They might struggle with anxiety, they might speak English as a second language, they might think they don’t have the right personality or skills, or their circumstances might have made it hard. The audience, however, are unlikely to be judging them, because whatever they are doing is important.

I tell them this while wishing I was as gifted as them. Often the way, isn’t it, when you forget to retain your own advice. And remembering all that is easier said than done, because we cannot guarantee that we will not get a negative reaction. I’ve made all too many autistic social slip ups that have – at best – resulted in odd looks, if not hostility. But when we have a job to do, and we want to do it properly, we don’t have to let our weaknesses stop us.

We are all the same in that we all have weaknesses. A mix of character flaws, things we’re not good at, or even just our current mindset. Living with Asperger’s, for all its fine qualities, is a daily reminder of that. Literally, at times. You misinterpret people, you melt down, you have poor physical skills. Yet just because we take longer to learn some skills, it doesn’t mean we can’t learn, or that we should shy away from challenging situations. Sometimes we are acutely aware of our struggles, sometimes other people can see them more objectively. Either way, the very essence of doing something for God and the church – and the people in your life – is giving them the best version of you that you can give.

Autistic insecurity

Isn’t it interesting how our personal struggles grow and change with us? So often, I see Facebook posts about how much simpler life was when the most stressful thing was running out of colouring pencils. Or how Year 7* kids have no idea what real stress is. But our worries are no less real in the moment just because there may be worse to come, or there are others with bigger problems. A common feature of Asperger’s Syndrome is seemingly irrational anxiety over any potentially negative situation. So, as an Aspie myself, I thought I’d reflect on my own experiences here.

For a start, children with AS can sometimes have a very black-and-white understanding of the world, which may be particularly noticeable in their understanding of what is safe, and what isn’t. Most people are aware that too much sugar is bad for you, and hey, wouldn’t life be easier if more children understood this! But what do you do when your child is afraid to eat even a single sweet for fear of getting fat or feeling sick?

Thankfully, I’ve long since set myself a limit. No more than the equivalent of two moderate portions of dessert in a day. Maximum. It really pays to know your capacity.

In a similar way, you could say it’s healthy to have an aversion to germs and sickness. What is possibly less healthy is to have an anxiety attack whenever you – or even someone else – starts feeling ill. Or to be afraid of food that had even the slightest chance of becoming contaminated. You know, like when fruit gets bruised, or perishable food is a day past its sell-by-date.

As we start to mature, we often tend to worry less about the physical world, and more about problems with other people. I’ve always found conflict a struggle, and I think this has evolved from Mum having to skip parts in my Pingu storybooks where anyone got cross, to me soaking up other people’s negative emotions and not wanting to make things worse. I have improved – I want to assert my opinions, or say no, and I’m more likely to now – but old habits die hard.

Besides, social situations can cause a lot of anxiety for people like me, because we’re so afraid of making mistakes that we couldn’t have foreseen. In a big group of people, it’s easier to keep a low profile because that way, at least you know where you are with everyone else. For me, groups of three are the worst. So often, the other two will hit it off really quickly, and I just don’t know how to keep up.

Living in a world where socially skilled people come out on top can create a strong desire to prove oneself – if not socially, then intellectually. I’m fighting despair when it comes to all the job rejections I’ve had – how do I know employers don’t find AS to be a social turn-off? I’ve always wanted to be a writer, and autism awareness is a noble cause. But, if I’m honest, my ambition does come from a need to have something to aim for. Because we, as people, need to find meaning in something, and maybe our best chance to prove ourselves is by pursuing something important to us.

 

 

 

*aged 11-12 years

Asperger’s and faith

Last year, during my weekly New Wine discipleship course, I had to lead morning devotions for one session, and I was asked to discuss how being on the autistic spectrum affects my faith. My immediate reaction was to think that having Asperger’s Syndrome isn’t relevant to every little thing in my life. I mean, there are plenty of factors that have shaped my beliefs, and my attitude towards church. But is AS really one of them?

It would be nice if I had some fascinating backstory of how I became a Christian, but the truth is, I was raised going to church. I was very lonely as a teenager, and it was while my confidence was at rock bottom that I got more involved with church youth activities. I went from being unable to talk about autism to being able to explain how it affected me without being afraid of judgement. Here was a social scene that was outside the norm, and as well as fitting right in, I was learning what being a Christian was really about. So in that sense, autism did have a role to play.

Churches in general are often a real mixed bag. From the outside, it would be easy to see Christians as either deluded, self righteous fools, or as people who cannot be anything but kind and inclusive to their neighbours. But people just aren’t that black and white, and Christians are no exception. And I would be lying if I said Christianity has been an easy ride for me, because it hasn’t. There are opinions I struggle to agree with, and many more issues I don’t even understand.

Besides, a church community is a social group like any other, and that means people, and mixed messages, and complex relationship dynamics. At the beginning of my discipleship course, I was surrounded by other young people who I would be spending a whole day with every week. Some people already knew each other, some didn’t, but we were encouraged to “go deeper” with each other from day one, and the very idea spooked me.

While other people bonded within the first month, I got off to a shaky start and I thought I’d never get used to it. It would have been so easy to withdraw and keep everyone at arm’s length, but I made myself get to know them, remember their names and make friends. Before I knew it, I had completed my first mission trip and was talking about everything I had learned in front of an audience. Seems that God really does see us through these things!

Which brings me back to my morning devotions talk. Having been on the course for three months, I reflected on my experiences at church so far, and the message I wanted to share came to me. So that morning, I got everyone to discuss the passage in Genesis in which Moses insists that he doesn’t have the skills to lead. And the thought I left open to discussion was: We all have something that shakes our confidence in our potential. Moses’s was his fear of public speaking. Mine is having a form of autism. What’s yours?