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 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?

To my future employer…

My internship is over, and once again, I am fervently applying for jobs. I think of it as being like uni coursework, except you get either no feedback, or negative feedback, in response. Pretty dispiriting.

My parents advise me to mention on any job applications that I have Asperger’s, and to explain how that affects me. My former boss says to just mention it if the topic comes up naturally. And I do worry that mentioning it too much puts people off. But I also worry that if I don’t explain properly, people won’t understand. Which got me thinking: what do employers need to know?

Having Asperger’s does not stop me from being relational. I’m not allergic to people. I want customers/clients to get the best out of whatever I am helping to offer. I want my colleagues to have a good working day, and I love it when I make friends in the working environment. Basically, I care about the people I work with, and I will go the extra mile for them.

I thrive when I can work on something carefully and meticulously. I’m happy to do jobs most people find boring, if I know what to do. I want to to my job, and do it perfectly – whatever it is. If a job needs doing, and the expectations are clear, I will focus hard until it is done. Simple.

Being on the spectrum means I am less expressive. Sometimes I don’t come across as interested or enthusiastic as I feel, and I may not know how best to show it. I also find it harder to pick up on non verbal communication, and if I knew exactly what that was, then I wouldn’t find it so hard. I think I’m being normal, then somehow everyone around me just “gets” each other, and I’m left wondering what I’m missing.

I like to know what is happening, and what any plans are. Apparently more so than most people. If everything’s happening quickly, and lots of people are talking, I know I keep asking what’s happening, or what we’re about to do, and even if it seems repetitive, I really appreciate a clear explanation.

When explaining my struggles, the most important thing is understanding. If I need help, or something to be done differently, I will say so. For issues like the points above, however, the most helpful thing is to simply remember them, rather than thinking I’m weird or helpless.

Some pretty basic points here, but crucial too, I think. Looking for a job too? What would you add to the list? And if you’re already employed, is there anything you wish your employer or colleagues understood?

 

“Things Not To Say To An Autistic Person”- my reaction

If I had a pound for every time I read or hear the statements below, I wouldn’t be job searching…

Today I thought I’d take a different approach to usual and have a look at a video: BBC3’s “Things Not To Say To An Autistic Person” available here: https://www.youtube.com/watch?v=d69tTXOvRq4. It’s part of a series in which people in a social minority share with each other – and the viewers – what sort of things they constantly hear from people. And after watching the one about autism, I thought why not share my thoughts? So here are the statements covered.

“But you don’t look autistic!”

Can you tell me what an autistic person looks like? I’ll have a go. Human sized. Hair, mostly on the head. Two eyes. One mouth and nose. Four limbs, but only two are used for walking. I can’t really give much more detail, though, because no two autistic people are alike…

Autism isn’t a physical condition. In fact it’s not even one condition, and I’m well aware that those on the severe end of the spectrum may present as being obviously different. But it’s only their behaviour that shows it.

“What’s your special ability?”

The assumption that people like me have a special ability is, to be fair, loosely based on truth. It also implies that people on the spectrum have superhero alter egos. Which isn’t the case, because frankly, life’s not fair.

It is common for autistic people to have an above-average IQ, and an intense, detailed fascination with their area of expertise. I mean, not every five year old would know a polymorphic snake when they saw one. And yes, assuming someone is gifted is better than assuming that they’re dumb. But blatantly assuming anything can sound annoying, and anyway, it’s not always as simple as autistic people having one super-talent and struggling with everything else. Autistic obsessions may be rigid while they last, but they can change and overlap.

“Everyone’s a little bit autistic”

Nothing wrong with this statement exactly, but does everyone who coughs have a little bit of asthma?

“Autistic people don’t feel empathy

Let me stop you there. Many autistic people aren’t as expressive as neurotypicals. We don’t always know how to respond to people during immediate, face-to-face interaction, and yet somehow, we over-empathise. If someone I’m with is unhappy, it’s like the air is thick with it.

“You could be normal if you tried”

I don’t try. I just am. For me. Don’t even get me started on healing

“How would you describe autism?”

A hard question, but not necessarily an inappropriate one. Having Asperger’s, i.e. at the mild end of the spectrum, I’d say poor co-ordination, difficulty reading people, a mix of detailed and innovative, and overall a bummer, but also perfectly normal. Well, “normal.” If you want a lengthier description, you’ve got one right here.

“What is the best thing about autism?”

To be honest, it’s a nuisance. But hey, I can joke about lacking empathy or humour in a way that would be insulting coming from anyone else. I have life experiences, and an understanding of the world, that are apparently different from neurotypicals’. Plus, if I didn’t have it, I might not be writing this blog.

There you have it. Personally, I wouldn’t put a ban on those last two points, but other than that, please try to remember the issues touched upon. And while you’re at it, watch the video, and tell me what you think. How can one deal with these statements? Could they be replaced with something more appropriate?

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.

 

 

Girls on the spectrum

Girls with autism are often seen as something of a rarity. A lot of writing on the subject, unless specifically about girls and women, focuses on traits more common in men on the spectrum. Then again, that might just be linked to the patriarchy. But still. The popular statistic is that autistic men outnumber autistic women – 4:1.

Is that actually true? I don’t know. It is a popular belief that an autistic brain is an extreme version of a more average male brain. But that doesn’t explain why women on the spectrum exist at all. There probably is some genetic influence. I mean, colour blindness, left-handedness, and ADHD are more common in guys. Yet others would argue that autistic girls slip under the radar. Why is this?

For a start, girls are thought to be better protected among their peers at school. Maybe up until the teen years*, anyway. Girls with it tend not to care how they come across. Girls without it aren’t too worked up yet about their social image. To them, that girl who needs help in lessons and who still carries toy animals everywhere by 11 years** is in need of social salvation. Who better to take under their wing?

Meanwhile, autistic boys are apparently more vulnerable from day one. Most boys run on dirt, chaos, physical competition and other autism nemeses. Boys who don’t may very well find themselves at the butt of all that. And men who don’t are often presumed to be gay.

But boys on the spectrum still have those surpressed, testosterone-fuelled emotions. Combine that with being in a world where your peers use you for target practise and nothing at school makes sense, you can see why some are prone to angry outbursts. This isn’t unheard of in girls, but it is less common. For one thing: sorry guys, but girls do tend to be more in tune with their own emotions on average, and more likely to worry about how their actions affect others – even if their judgement here is poor.

On the flipside, this makes them less prone to emotional outburts. Which sounds like a good thing. It’s easier for those around you to deal with, and who wants to (figuratively) explode under pressure anyway? But keeping inner turmoil under wraps all the time is like being unable to expel poison. It goes unnoticed, and unaided.

Which is why we need more awareness. As far as autism is concerned, men and women aren’t always polar opposites. But, like neurotypicals, there are differences. Guys might be fascinated by Maths, Physics, computers and the like. Or they might be more creative. Girls may err towards art, literature, and animals. Or they might have a head for technical stuff.

Whatever you have learned about girls, guys, and the autistic spectrum, keep on learning. And what better way to learn than by getting to know an individual as the unique person that they are?

 

 

*Don’t even go there. Actually, please do. Right here.

**Not mentioning any names. Especially not mine.