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

From barely functioning to melting down

When I’m somewhere outside my comfort zone – anywhere new, busy, or with a lot to remember – I will go into the mental equivalent of power saving mode. I keep my head down, remain on the sidelines, or wherever it’s quietest, and withdraw into my own head.

If I have an obligation to be in this place, I will do what I think is expected, but, though polite, will not be at my most sociable. Nor my most attentive. My brain is doing only what it has to. As soon as is socially acceptable, I will recharge in the seclusion of my own room, and start to feel more human pretty quickly.

Now turn it up a notch. I’ve been in such a place too long, or there are too many demands being made, or maybe I’m in a difficult situation with a person. At this point, even power saving mode is wearing thin. Until it becomes…meltdown mode.

What is a meltdown, anyway? It’s something people with autism experience. It’s something people with mental illnesses experience. It’s feeling something snap inside you and suddenly having to leave the room because you can’t take any more. It’s crying because of some minute trigger that unleashed festering negativity. It’s snapping irrationally at those nearest to you. It’s doing anything to shield your senses from the world around you. It’s being too stressed, bewildered, and unfocused to function. It’s…it’s…it’s…

Well, it’s lots of things really. And no two people melt down in the same way.

For me, meltdowns are mostly internal. I don’t have big, emotional outbursts, because it just isn’t in my nature. I feel that mental “snap” inside me, and I might cry, or try to escape, but usually I’m just stuck in a daze, with my mind in turmoil and my social skills gone. Outwardly, on the other hand, there’s little noticeable difference between that, and power saving. So it looks like I’m doing ok.

How do you deal with a meltdown anyway? Write down what it means for you, and the situations you might struggle with. Useful for showing to people for future reference, and can help you understand yourself better, too. When facing a high-stress environment – for me, it would be airports, very large train stations, or my graduation ceremony – plan when and where you could take a breather. Learn in advance what to expect from the occasion. Stick with someone who understands you well. And bring a book, or an ipod, or anything that helps you calm down.

Whichever coping methods you come up with, try to use them while power saving mode is still working. Because the more you are struggling, the harder it may be to communicate your needs. It’s not easy telling others about what feels like a weakness, especially one that the majority won’t have experienced. But the people around you have a right to know. And you know what? You have a right to not suffer in silence.

 

 

The good side of Asperger’s

A lot of people these days try to put a positive spin on being a bit different. I realise that I covered this a couple of posts ago. Because I wanted to make it clear that it’s ok to acknowledge the negatives. But my personality makes me the sort of person who, if I’m not careful, gets weighed down by the bad stuff. I think the aforementioned post, and many other (written and verbal) rants from me have shown this.

So just for once, I thought I’d look at my Asperger’s with a brighter outlook. DISCLAIMER: I don’t mean to brag – while some of the following is what people say about me, this is focusing on AS as a whole, not an individual’s personal strengths. Enough rambling!

Firstly, while people do exaggerate about this, it is true that Aspies are more prone to above-average intelligence than most. And many have skills that are less common in neurotypicals. Some might have a great sense of pitch. Others may be gifted artists. As for our special subjects? Well if you want to know more about cats, or Myers-Briggs personality functions, or anything about the mind, you know where I am.

Then there’s understanding people. Being on the spectrum means you may struggle with this. But for me, at least, it’s on-the-spot social interaction that’s tricky. Once you’re aware of this, you may spend a lot of time trying to make sense of the social world. And you know what? A slightly “outside” viewpoint can lead to a different, and maybe even deeper, understanding of people.

Also, AS people are known for being unwavering and just a little stubborn at times. Making decisions isn’t easy. Going back on them is twice as hard. But I’ll say this. If you have this tendency, chances are, you’re reliable. You keep to a predictable way of doing things. If I’m doing something new and significant, I will carefully plan. Or try to. As for breaking rules? They’re probably there for a reason, and unless they’re not going to work, I’m not breaking them just because I can.

And lastly, this one goes out to everyone in a minority. It might not be a walk in the park, but you have the potential to reach out to people like you and help them feel less alone. Think about it – you could be a role model! Everyone finds it comforting when they find someone they can relate to, and I’m no exception. Sometimes we “token minorities” have to stick together. So why are you still reading this post? Go out there, make someone’s day, and shine!

Proud to be different?

For those of you who don’t know, I’m not only autistic, I’m also biracial. Specifically half Taiwanese, half British. And throughout my life, I’ve had more people than I can count react to this. Often unprompted. I get complete strangers saying ni hao to me. Men trying to be funny. Women selling Chinese literature. Boys at school who wanted to “have my Chinese babies.”

People have argued that there’s nothing wrong with saying “ni hao.” It’s only hello, right? Well it’s not funny. Or cool. It makes me feel the same as when men catcall me – they might not be using a direct insult, but it is still disturbing. Plus how do I know they’re not making fun? You don’t go around singing Lion King songs to black people. Or assuming that an autistic person is a living incarnation of Christopher from The Curious Incident. Oh, wait…

Yet being in a minority is seen as special. Which brings me onto a conversation I had with Mum, following a man-trying-to-be-funny incident the other day.

These days, it’s both healthy and trendy to do a Lady Gaga and proudly say “I was born this way, hey!” And many people believe it’s good to be different. Great that they think that, but it’s easy enough to say when you haven’t fallen behind at school, dealt with countless preconceptions about your race or how your brain works, feared judgement even from those closest to you, had people take you less seriously than they should…Sometimes I still hate being different. There, I said it.

But by all means be proud of your brain. Or heritage, or whatever. If you’re neurotypical and/or firmly rooted into your home country by 10 generations, your support means a lot to people like me. Either way, remember that no matter how well things are going, it can be tough. And if you’re not happy in who you are, don’t try to pretend otherwise – it’s ok to be frustrated.

If it does get you down and someone is trying too hard to be positive, say: “I’m glad you think it’s a good thing, and I realise that it’s important to be happy in who I am. But being/having x,y,z can be hard because (insert reason), and sometimes I need people to acknowledge that and sympathise.” This isn’t the same as being pitied just for being in a minority – it’s simply feeling sorry that someone else is struggling.

And if someone says something careless without trying to hurt you, just explain that you are a regular person. Say that displaying preconceptions about you makes you feel really uncomfortable, especially because sometimes people do mean it unkindly. Or because they have assumed something that just isn’t true. If they are apologetic, accept their apology and move on. If not, just…move on.

Meanwhile, I’d better get back to counting red cars. And giving out fortune cookies. Zai jian for now!

Proudly autistic and Asian

 

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.

 

Kind or patronising? Just ask

One of the things that I had no idea how to deal with at school was when people spoke to me as if I was a toddler. I would be muddling through a lesson with as much difficulty ease as the next kid. Who, if they weren’t ignoring me, would be trying to do stuff for me, explaining the simplest things, and telling the others “it’s not her fault she’s slow.” Or weak. I even had one person ask me – completely innocently – if I had brain damage. Seriously.

And it wasn’t just kids. I remember a teacher talking about our latest homework assignment, and mentioning how I’d been allowed to skip certain parts because they were too hard. Or classroom assistants who would follow me like a shadow in front of other kids, when all I needed was to ask a few extra questions.

What I found hard was knowing what to say. For the most part, I’d internalise the inner conflict between not wanting to offend and hating feeling patronised. Very occasionally I’d speak up, but the other person would act like I’d just karate chopped them! So much for not offending.

It’s hard to know where to draw the line here. If you have a disability or illness – whether physical or mental – you will probably have extra needs that require accommodation. And you don’t want to be ungrateful to someone who wants to help. Don’t wait until you feel like exploding. Just explain to them the nature of your needs – and be sure to add what you don’t need.

And if you are someone who wants to help, you might want to look at these pointers.

Don’t be afraid to ask your autistic/partially sighted/depressed (etc.) friend what sort of help they need. Do be discreet, especially if they are with other people – you don’t know how open they are about their needs, and they will appreciate you trying to learn without embarrassing them. One of my new discipleship course leaders took me aside recently to ask me about my Asperger’s and how it may show itself on the course. I gave a brief explanation, told her about my blog, and later brought in this letter. Both parties were happy.

Don’t make assumptions about their abilities. Any writing about their condition only describes exactly that – the condition. Not an individual who has it. Just give them the help they ask for. No more, no less. I find I’m more comfortable asking for help if I know it won’t make the other person act like I’m stuck in a burning building. Trying to help always comes from the best of intentions, but when repeatedly done unnecessarily, tells them “I don’t think you are capable.”

Note the difference between sympathy and pity. Pity is when people say “I feel so sorry for *insert name* because of that thing he/she has.” Sympathy is paying attention to what someone is actually struggling with, and offering moral support because you care. As for words like “cute”? Babies are cute. Pets are cute. Mature adult humans? Forget it!

And finally…remember that not every aspect, or even hardship, of a person’s life is linked to their condition. Special needs or not, anyone appreciates friendship from someone who takes them as they find them.