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

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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.

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?

Less employable?

A few weeks ago, as some of you are aware, I had a bit of a setback. Three months after I finished my Christian bookshop internship, I got a job as a packaging assistant at a warehouse, and was elated. I spent the whole day filling Land of Soap and Glory gift sets, moving faster than whenever I exercise after weighing myself. Apparently I didn’t start meeting my targets until the afternoon, but not to worry, other workers apparently took weeks to speed up.

So I went back for day two and got sent home for not working fast enough. After being given no training, no target, and no way of knowing how close I was to meeting it. Way to dramatically change the mood.

I sometimes think that having a learning difference and trying to find a job is the human equivalent of being one of the “less adoptable” pets at an animal shelter, overlooked because they have a medical condition, or are old, or need to be rehomed in a specific kind of environment. And lets face it, having Asperger’s does make some things harder. It also makes other things easier. But it’s the potential disadvantages that most people worry about.

From my experiences as an intern, and as a volunteer at various places, the main things I struggle with are speed and interpreting other people. Despite my frequent complaints about rude customers, the bookshop was probably the most Aspie friendly environment I’ve worked in. It required attention to detail, a love of literature, and an approachable, customer friendly manner. But then I also had to frequently ask customers to pause the lengthy set of instructions they were giving me, and repeat back to them what I think I’d understood. Then of course they’d rephrase everything, and I’d have to ask again.

As for speed, university taught me a lot about writing a whole article in the space of half an hour. What it didn’t teach me was how to stop being dyspraxic and chuck exactly the right number of toiletries into a gift set, and complete an unknown number of packages at top speed with no training.

Yet so often, the reason I work more slowly is because I’m trying so hard to do it perfectly. My blog posts, while not perfect, are a testament to this; I spend all afternoon trying to think of a great topic, and the best way to word it, and usually start writing at 5.30pm! In a shop, I’m happy to do the long, detailed tasks, like sorting and stickering and tidying, because I thrive on precision.

I’m also very firm about adhering to rules and commitments. Apparently that’s a bit of an Aspie trait. I’m rarely late, I don’t cancel plans unless there’s no choice, I do what I’m asked the first time (usually), and I don’t break rules. At the bookshop, we were frequently left short of change for customers whenever random people came in asking us to change a £20 note for them. I pulled a few strings, and now the shop doesn’t give more than one £5 and five £1 coins.

I suppose what I’m saying is: future employers, don’t be put off by words like “Asperger’s” and “autism”. If you don’t understand, just ask – if you don’t get given an explanation anyway. If the job vacancy has attracted the interest of someone with a learning difference, then maybe the nature of the work is right up their street. Keep an open mind, and a giving attitude, and you’ll have one happy employee. Provided you keep them for longer than a day.

A strain on the senses

Have you ever watched a film – or children’s TV show – told from the perspective of a small, anthropomorphic* animal in a world full of humans? Put them in a scenario where they are trying to navigate a busy place packed with people. They cannot focus on their destination when there are so many legs to dodge. They have to make split second judgements about where to move when, they feel like they could get squashed at any moment, and you can bet there are beeping cars, barking dogs, lots of shouting, and any number of obstacles.

It’s a weird analogy, but that’s what springs to mind when I try to explain what a sensory overload feels like. I might not be small, furry, and animated, but this is how I feel walking through a massive party, an airport, a big train station, or even a busy town or city. I can’t mentally filter everything I can hear and see. I find it hard to read people and make judgements about how and when to move, so I have to really concentrate when moving through a crowd. Crossing roads without traffic lights is even harder, and don’t get me started on cyclists. Also, if someone is talking to me I can often hear them well enough, but I’m not in the best place to give an intelligent reply because I can’t filter out what I need to.

People with autism are known for over – or under – reacting to stimuli. My theory is that our senses aren’t different, exactly; rather, our brains respond differently to sensory data. Can you see why, when there’s all sorts happening in the background, we show attention-deficit tendencies? To use another TV analogy, I sometimes wonder if someone without autism experiences that kind of environment like a scene in a public place where background events are visually and aurally dimmed down, and what they are focusing on is front-and-centre. But I can’t speak from experience.

And it’s not just hearing. Some, like me, are easily startled by touch; Mum says she has never worried about me getting touched inappropriately because I’d break the wrist of anyone who might try. Similarly, certain textures may be uncomfortable. Some people don’t like clothes made from specific materials, or that are too tight. As a child, I always had to cut the labels off, because I was too aware of them. Some people, on the other hand, may be less aware of physical sensations. They may not notice even severe pain, or they might simply neglect their own needs.

Some people struggle with particular food textures or flavours, and may be unable to stomach anything too stodgy, bitty, spicy, inconsistent, etc. Having been raised eating Chinese/Taiwanese cuisine, I love spicy, vegetable based food. Yet I’ve never liked mayonnaise, fruit crumble, custard, gravy, or various stereotypically British things. Also, despite always liking jacket potatoes, it took me years to trust mash. Asperger logic at its best.

I think this is another issue where, for the most part, I explain so that people are aware, not because I expect help. Anyway, awareness is helpful if it means the other person knows my social skills might be down until I can hear myself think, and in situations like that, the best help is probably the most subtle.

 

 

*meaning human-like in some way (physically and/or mentally). Think Disney.

The neurotypical mask

We all spend a good chunk of our lives putting on a metaphorical mask for the world around us. Relatable, right? You wear an “I’m fine” mask when you are dying inside. Or an “ideal version of me” mask when with people you can’t quite be open with. Or an “I’m in control of my life” mask when you suddenly realise you are an adult…

Or a “neurotypical” mask, as an Asperger person in a world of neurotypicals. That is, non autistic people.

This past week has not been the best. Having got a packaging job the week before, I turned up for day two and was sent home for not working fast enough on day one. Ouch. And it’s at times like this that my neurotypical mask keeps slipping.

Let me explain.

With my mask, I can listen to someone without breaking eye contact to look at everything else I can hear just as clearly. With it, I can laugh at my own mishaps without getting frustrated or embarrassed. I can not react to people I don’t know well touching me unexpectedly. I can go to parties, and have fun while fighting the feeling of being both overcrowded and isolated. I can not only make small talk, but also put new people at ease with my sense of humour. With my mask, I can manage rather a lot.

But when the mask slips, I say the bare minimum to new people. When it slips, I get irrationally angry about any mistake I make, autism related or not. My brain drops my social skills in order to free up the capacity to deal with my current situation. I am slower at understanding sarcasm and jokes, and interpreting instructions. I either avoid social gatherings, or spend the whole time feeling desperately lonely and self conscious when everyone else knows how to bond in a big group. I am very easily confused by too much background noise, or too many people talking at once.

See? The neurotypical mask is a hard mask to hold. In fact, the other day, when I had a panic attack at a social gathering and shut myself in the bathroom for ages, I think it must have fallen off altogether. And when that happens, I can’t face anyone other than – at most – my parents, and I either clam up, or rattle off every scary thought and feeling inside me without even trying to find my mask.

Basically, having a learning difference can be exhausting. We on the spectrum put so much brain power into making sense of the neurotypical world that we are bound to burn out. If this happens over something that “isn’t that hard!”, then either it is that hard for us, or something else has pushed us to that point. I speak for myself when I say I will explain what I need when I can. Neurotypical people, I realise that learning differences aren’t an excuse for every shortcoming, but do try and cut us some slack once in a while.

 

Asperger’s and Chris Packham

Have you ever marvelled at how much you can learn about something just by reading what people are saying on Facebook?

The other evening, I saw part of “Asperger’s and Me: Chris Packham”, in which Chris Packham, TV presenter and nature photographer, discloses his Asperger’s diagnosis and talks about how it affects him. Having not watched all of it, I can’t do a detailed analysis of the whole thing. Instead, what I thought I’d do is explore a couple of issues brought up by people discussing it on Facebook, and also share my thoughts on what I did see.

I’d never heard of Chris Packham until now, and this is thought to be the first time he has talked about having Asperger’s. In response, some people have said that this film has shown him in a whole new light, and that they had simply thought of him as socially awkward and hard to relate to. This may make them sound bad to you, and is definitely part of why having Asperger’s is lonely. But no-one’s a mind reader, and this is why disclosure is important. It’s hard – I couldn’t face telling anyone for years – but people need to learn, and many are willing to try.

One part I did catch was where he visited a school and a clinic in the US, where Asperger’s and other forms of autism were seen as something to be cured. I’ve said what I think about healing autism, and honestly, this bit disturbed me. The clinic tried to treat patients with shock therapy – electric shocks into the brain that were supposed to realign certain parts of it. The school was chaotic, noisy, and disorganised. The headteacher likened autism to cancer. Worst of all, frightened, screaming children were physically punished for showing any autistic behaviour.

Another issue that came up was: do people “suffer” from Asperger’s? Or is that offensive? Well, it’s not an illness, I’m very firm about that. You don’t catch it, develop it, treat it, stop having it, die of it, or pass it around. With a loving support system and good education, you develop and grow, but you don’t get off that spectrum!

So in that way, you don’t “suffer” from Asperger’s. What you suffer from is being autistic in a world made for neurotypical people, for whom body language and facial expressions make up the native language. You suffer from prejudice, and living with the knowledge that some people want people like you “bred out”. You suffer from people not warming to you because you don’t know how to make friends. That’s a lot of suffering, for a condition that doesn’t cause suffering!

Do I agree that people “suffer” from AS? You don’t suffer “from” it, but I can’t deny it can cause you to suffer. What do you think?