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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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

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 – or communicating to – other people. Experts would say non-verbal signals. Or eye contact. Or me 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.

 

 

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

Little things I have needed to learn as an Aspie

That no matter how much I genuinely like a present someone has given me, if I don’t look at them, smile, and act enthusiastic, they will think I hate it. My mum had to teach me this as a kid.

That if someone (usually one of my parents) is trying to get me to say goodbye to someone not directly in my line of sight, simply shouting “bye” will not cut it.

When someone is talking at length to me, listening means more than just taking in what they are saying. It means looking at them on and off, sounding interested, encouraging them to say more, and saying a few things yourself where appropriate. Comes naturally enough now, but completely bypassed me at primary school.

To remember to make eye contact, to some extent (more on that here).

To be able to say, when I am feeling confused or overwhelmed, “I’m autistic, I find hard, could you just explain…” etc.

That actually you have to stand up for yourself, say no, and set firm boundaries, even if it means someone else can’t completely have their own way. At school, I hated the thought of upsetting people by saying no, when they so desperately needed my stationery, or even treats from my lunch.

That there are some people who are fine with this, as long as it works both ways.

That the worst case scenario in a new social situation is that I’ll find it kind of boring and be happy to get back to the privacy of my room.

That the best friendships aren’t forced.

The difference between when friends need advice, reassurance, or a listening ear. Advice: they don’t know how to deal with a situation and are asking your opinion. Reassurance: they’re saying “I feel so stupid, guilty, embarrassed, etc.” or “I’m not weird/stupid/in the wrong, am I?”. Listening ear: they’re not asking anything of you; they simply want to talk something through or explain something to you.

That feeling sad about someone else’s struggles is a double edged sword – you can either be overburdened by feelings of helplessness, or keep the focus on them and pay attention to what they need.

How to recognise when my batteries seriously need recharging. As a child playing at someone’s house, I’d frequently go and spend time with any grown-ups available. Though I didn’t realise this, I was feeling mentally exhausted and was giving my brain a rest. Now, if I’m socialising and enjoying it, sometimes I don’t realise how much I need alone time until I get it.

 

 

How does Asperger’s Syndrome affect me?

To recap: on my last post, I mentioned that, as part of my internship, I am doing a Christian Discipleship course. Which, last week, involved going on a weekend away. I often enjoy these things more than I anticipate, and knowing that this one involved a lot of socialising and outdoor activities, I needed explain to the group leader about how Asperger’s affects me.

Hence my parents persuading me to write this letter. For anyone getting to know me, or someone else with the condition, you might find it insightful. For my fellow aspies out there, feel free to use this as an example or template* when explaining your own needs. Here goes:

Hello,

I’m writing to explain how having Asperger’s Syndrome affects me. Asperger’s is on the mild end of the autistic spectrum, and is less obvious than other forms of autism. I am gentle and articulate, and communicate best through writing. I’m looking forward to getting to know people, and would really like to get the most out of being a part of this community.

My main struggles include social interaction, physical co-ordination, and taking in lots of information from different sources or with a lot of distractions. In a group setting I struggle to keep up with what’s going on. I may either keep asking or lose focus altogether. It helps if someone discreetly updates me on things I need to know, one to one. I am more likely to understand instructions/explanations that are a concise summary of the main points, rather than too much detail. I like being on top of schedules, so I hope I don’t seem pushy if I keep asking what is going to happen

Lively group situations can be overwhelming, and I don’t present myself at my best when I don’t know anyone. I tend to be more at ease and outgoing with a close friend. Once I am used to people, I am co-operative, friendly and motivated. I am better at mingling than I was, but I still sometimes drift towards the edge of the group without trying. I also find it hard to remember names and faces at first – just bear with me when this happens.

Despite this, I do want to connect with people. I try very hard to treat others well and care deeply for my close friends. Contrary to the autism stereotype, I am empathetic and intuitive to people’s emotions. It’s on-the-spot, face-to-face interaction I find harder, not to mention draining! It’s not that I don’t want to be with you personally, it’s just that I often need time to myself.

Being autistic means that I show signs of dyspraxia (impaired physical co-ordination). I’m good at long walking, running and lifting heavy objects, but have more trouble with team games, walking on uneven or unstable terrain and learning directions. My fine motor co-ordination is much better, meaning I am good at using my hands for small, precise tasks.

I know this sounds like a lot, but apart from where specified, I don’t expect anyone to do anything drastically differently. Usually I just want others to understand and be patient. When in the right place (literally and emotionally) I am intelligent, mild mannered, witty and a deep thinker, and I hope that I can make friends and contribute to the fullest.

Hope this helps, and thank you for reading!

Grace

 

 

*but not publicly as if it was your own!