“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?

Getting healed?!

A few weeks ago, a customer came into the shop, and, as customers often do, asked me a lot of questions at once that I was struggling to make sense of. When trying to get him to clarify what he wanted, I told him I have Asperger’s Syndrome, a form of autism, and sometimes communication is confusing for me. But alas, there is hope, fellow Aspies. Because according to this man…I could ask God to heal me!

My reaction, as a Christian, is this. I believe in praying. I believe that people can be healed. I also believe that, just because God can heal, it doesn’t mean that He should, or will. I have to say, though, I wish my immediate response had been that eloquent. What I actually did was falteringly explain that autism is not an illness to be cured, but rather a difference in the brain, and that implying otherwise can hurt. He got it in the end, and surrounding colleagues and customers were impressed. So clearly I did something right.

But then I thought to myself, no matter how many times I hear how important it is to embrace our differences, I do get frustrated. I do wish I didn’t need extra help. I’m often fed up with my struggles, yet I couldn’t help feeling offended at the notion that I should change. Am I just acting like a special snowflake?

I don’t know. But not every struggle is a problem that needs to be “cured”.

I recently had an interesting message exchange with a friend who, as we were chatting, was watching a documentary about children on medication for conditions like autism and ADHD. She asked me how I felt about that. Now, I respect people’s decisions here. It’s up to the individual. If medication proves more beneficial than not, then good for them. But I’m wary of people who treat Asperger’s as an illness, when it’s not caused by germs, or hormones, or bodily harm. So I gave her the following analogy.

Imagine a group of people, all from the same country, faced with someone from another country and who speaks a different language. Chances are, they are lonely. They want to communicate, but they find their limited vocabulary very frustrating. They might wish they were the same as everyone else, but should everyone be praying that they suddenly become British? Or American, or the nationality of your choice…

No. Of course not. It’s up to them to learn English (or whatever), and it’s up to the others to be patient with them. And it will always be their second language. But with enough learning and patience, they may speak fluently, and become a popular, respected group member. And they can bring to the table a language and a culture that everyone else barely knows about.

Do you get what I’m saying? In a similar way, learning differences can be a bummer. But they don’t have to stop you from flourishing. The trick is working through it, seeking support when you need it, and finding a way forward.

 

Life so far: growing up, autism, and 100 blog posts!

Years ago, I often thought about starting a blog. With my big dreams of becoming an author, it sounded like the sort of thing that all the high-flying writers are doing. Of course, it was just a crazy idea I had. Nothing serious. Right?

On receiving Blogging for Dummies for Christmas, I thought I’d at least show my appreciation by doing a quick summary of my world as a trial blog post. Now, four years and 99 posts later, my blog has definitely stood the test of time. It’s my way of reaching out, entertaining, and making my mark.

And this is my 100th post! So I thought I’d offer a much bigger summary of my life up until now.

Starting with Taipei, Taiwan, Wednesday 17th March 1993 at 1.13pm. My parents joke about how typical it was of me to come out at lunchtime. To which I say, how many people do YOU know who were born in the middle of the day, week, month, and academic year, on their due date?

People sometimes ask me what I remember about Taiwan. Kind of awkward because my earliest memories include me and my (British) mum hiding from my (Taiwanese) dad after they had been fighting. But hey, I also remember playing with our pets, walking through mountain scenery, and my 4th birthday party. It wasn’t all bad!

Just after said birthday, my pregnant mother and I hastily headed my grandparents’ way – Cam, Gloucestershire. My sister was born. I started school, and was happily oblivious to my teachers telling Mum how weird I was and blaming it on bad parenting. Then we found a council flat.

A year later, while we were on holiday, my now-stepdad made his debut. From then on, he kept turning up on our doorstep. And we on his. This went on for about three years, until he and Mum married, and we invaded his house for good. Did I mention what a cute bridesmaid I was?

Now in Loughborough, I ended up at a school that was actually competent, and hey presto, I was diagnosed with Asperger’s Syndrome. My response to the news? “Oh…can I have a piece of cheese?”

Secondary school pulled my head out of the clouds with a jolt. It was a scary world of social hierarchies, sport, and teachers with varying levels of empathy. I struggled with friendships. I struggled in classes. Most of all, I struggled to accept that autism was nothing to be ashamed of.

But gradually, I got involved with various social groups at church, and I finally started to make friends and open up about my difficulties. Meanwhile, I was studying animal care at Brooksby College. It comprised manhandling animals of every size and species, essays, poo, and overnight lambing. Pretty grim, but I passed with straight distinctions!

Because I wasn’t ready for uni afterwards, I did a couple of years of home study, and realised that my heart was in becoming an author, not a vet nurse. The second year proved eventful when my Grannie died of cancer, and I still regret not visiting more. But it was also the year I started at De Montfort University, studying Creative Writing and Journalism. It was challenging, and falling out with my friend when we tried living together was hard. That said, I learned more about writing than I ever had before, and I don’t regret it for a second.

And now, here I am, coming to the end of my Christian bookshop internship. It’s been a great year, with great people, and I can’t help wishing I had more time left. But few things in life are permanent, and as I reflect on my significant life events, I do wonder what the next one will be.

 

 

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