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.

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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 friendships – part 2

Does anyone else miss the days where friendships were formed by arranged play dates and a common interest in beanie babies? You know, before the days when the very word “friendship” meant a social hierarchy, in which kids who talked about cats all the time were not at the top? Yeah. Me too.

Just over a couple of years ago, I was at uni, writing regular online articles about being an autistic student, and I thought I’d give a few pointers on friendship. I didn’t fit in at uni, didn’t see many people outside uni, and was overly-dependent on a friendship that was going downhill faster than if it was rollerskating down a ski slope. In retrospect, I probably wasn’t in a good place to be doling out friendship advice.

I mean, what advice can I offer? That trying to make friends can lead to bitter disappointment, while not trying somehow ends in people bonding over a shared sense of humour before suddenly sharing all their darkest secrets? People in your life can make or break your trust. So just focus on the ones with whom you’ve exchanged secrets, shared your hurts and laughed until you’ve cried. The sheer quality of the friends I have made lately trumps all the social setbacks I’ve had, and I am so incredibly grateful to them.

As someone with Asperger’s, I think true friends are underrated. A few years ago, as a lonely teenager, I thought they were a miracle, as I wrestled with the notion that I might always have trouble relating to others. At best, other kids would come back to me when any boyfriends or cooler friends were out of the picture. At worst, they lost interest completely.

Over time, I have picked up a few tricks of the trade. Observation, for one. What does the other person say that hints at their personality? What do they find funny? What do they like to do? Or talk about? Then there’s empathy. Interpreting faces and body language may be hard, but if you really care when they’ve had a tough time, or are out of their depth, or even talking about something important to them, show it. Listen. Make eye contact. Encourage them to talk more, while respecting their privacy with sensitive issues.

And finally, a little humour can go a long way. If you can joke about how shy you are with new people, or something stupid you’ve done, then you can break through awkwardness. When you feel awkward, you can either metaphorically bury your head in the sand, or laugh at yourself and encourage others to do the same. Why do you think I dedicated an entire blog post to some of my most embarrassing anecdotes?

A group as good as it gets!

 

Handling conflict

Social skills are often a bit of a mystery to Asperger people. We misread faces and body language. We misunderstand certain instructions. We take a little longer to form friendships. That said, many people on the spectrum get pretty good at learning – or at least compensating for – skills like these. I like to think I’m one of them. But there is one social skill that I just don’t have yet: the ability to manage conflict.

In my last post, I talked about things that scare me. Conflict is one of those things. I sometimes wonder if it’s to do with early memories of family arguments, quickly followed by early memories of leaving behind everything I knew at the time. According to my mum, however, I was no better before then. My refusal to listen to any parts in Pingu story books in which characters got cross was a testament to that; my dear mother never tires of laughing at how often she had to change “shouted” to “said”. So clearly my personality played a part.

Is conflict particularly hard for autistic people? Look at it this way; any social interaction requires the brain to be on high alert for the implication behind words, and the very meaning of body language and facial expressions used. Now throw in some high emotions. Add a little anger, fear of making things worse, and a pinch of difficulty in expressing yourself eloquently. Sound hard to you?

As you know, AS people are often thought of as being logical and insensitive to people’s feelings. For me, the opposite is true. In the right frame of mind, I like to think I’m pretty logical. I can analyse myself, other people, and most situations objectively. Unfortunately, I soak up people’s negative emotions like a sponge. I’m bad at taking criticism, and I know it. I mean, when people have told me that, I’ve been offended, but I can believe it, with a bit of…well, objective analysis.

I’ve also had trouble setting boundaries for fear of offending, and it’s this that has caused many of my mistakes. At school, people would soon learn that they could help themselves to my stationery, or treats from my lunch, and be none the worse for wear. Yet anyone I complained to would offer the same crazy suggestion: say “no” to them, thus being selfish and hurting their feelings. I know, right? Unthinkable…

Fast forward to uni. The place where you form lifelong friendships. I thought the best way to maintain a friendship was to always put the other person’s wants and feelings before my own, and after a while, I became desperately unhappy. Which was a real wake up call.

I’d like to say I’ve learnt a lot since then, but I still find conflict hard. I want to be able to let other people’s quarrels wash over me. I want to know how to manage disagreements in a way that strengthens a relationship. But over the past couple of years, I’ve realised that standing up for your needs isn’t selfish, or unthinkable, because you can do so without tearing the other person down. Most importantly, everyone deserves to be heard. If nothing else, try to hold onto that.

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?

The challenges of change

People say there’s good change and bad change. A while back, I expanded on this. Some things should change, some things will inevitably change, some things shouldn’t change, and some things will never change. Sound about right?

This is definitely true in a broader sense, but at the time, I was actually thinking about people as individuals. People change all the time. Some refuse to budge when push comes to shove. Others make a conscious effort, and there’s a very fine line between putting on a show just to impress, and changing so that you grow and improve.

You’ve probably heard that people on the autistic spectrum – like me – struggle with “inflexible thinking”. In response, I’d say I’m a flexible thinker, and a less flexible doer. I’ve willingly dealt with, and sometimes even welcomed, something new. I don’t have a meltdown if one week has a slightly different schedule to most weeks. I’m wary of getting so stuck in a particular thought pattern that it’s impossible to see outside it. See? I can handle change.

But my parents would point out that, in spite of all that, I still find it hard. And actually, they have a point. If things are going to be different, I like to know about it in advance and prepare as much as necessary. Right now, post-internship, I’m at a bit of a crossroad. This past fortnight has had some rather unexpected ups and downs. On top of that, I’ve had one-to-one meetings with new people, job applications and an interview, and a new editorial role on De Montfort Uni‘s magazine, the Demon. I can’t deny, it’s all very unsettling.

I think the reason people like me struggle with change is because there is a lot we don’t understand that comes easily for others, and so we feel a strong need for our environment to make sense. When there’s a lot going on, and I’m always asking what’s happening, when, where, etc. it’s like I can’t see all that, and am feeling my way in order to get a picture of my current situation.

I suppose the main thing to understand about change is that it’s unavoidable. Also it’s hard to pinpoint any specific way of handling it when every situation is different. I guess if something new is coming up and you know it, prepare and learn, even if it means asking the same things more than once. New things that you know nothing about are harder, but they’re not always bad. When things do go wrong, be aware of your needs and emotional reactions, and think about how you are going to get through. As for good change, it might help to think about why it’s happening, or what good may result, and if you don’t know, even if it feels difficult, that’s ok.

 

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.