Getting healed?! Further thoughts

A couple of years ago, back when I was an intern at a Christian bookshop, you may remember I had a customer who was dead set on asking God to cure me of Asperger’s. That’s right. I gently explained that it isn’t an illness, or a flaw, and that implying that there is something wrong with the way I am is actually pretty insulting. A crazy thought, I know, but I think I managed to get it across.

What first got me thinking back to this incident was the comments thread on an article I read about autism. People were going off on all sorts of tangents, and I don’t really remember what the article was about. The comment that got my attention was from someone who had a child on the severe end of the spectrum. They mentioned that their child was having a pretty tough time with autism, unable to communicate clearly, and in need of constant care. And their point was that when people talk about how autism is a key part of who they are that doesn’t need fixing, it is actually harmful to people like that child for whom it is nothing but a burden. Because they would have a better life without it.

Wow. That definitely got me questioning my perspective.

Which – in regards to myself – hasn’t changed. AS does mean I have frustrations that many people don’t have to deal with. But if I wasn’t autistic, I would be a different person.

It did, however, pose a question that had never occurred to me before. Autism isn’t actually one thing. It’s a wide spectrum of very different conditions. That much I know. When I explain to people I’m autistic, I’m aware that, to them, that could mean anything. So of course there are people who don’t know how to talk to me, and who are surprised when I don’t always need help. Then on the other end of the spectrum, you have people who constantly struggle in a world that doesn’t meet their needs at all, and who would change it if they could. Is it problematic to label so many different conditions with the same name?

But of course, it’s not even that simple, because whatever end of the spectrum someone falls on, there will be other – often external – factors contributing to their quality of life. A person with Asperger’s may have experienced so much loneliness and isolation growing up, that they would give anything to change. A severely autistic person, on the other hand, may have a pretty comfortable life with just the right support.

So it looks like my reflection on this issue is inconclusive, and I’m sorry if that’s unsatisfying. I also hope there was nothing patronising or condescending about anything I said. If so, I’m more than willing to edit this post. Mostly I just wanted to share a few thoughts I’d never had before, and see how other people feel about this. What are your opinions?

Advertisements

Inspiration porn

Before I get to the point, don’t be fooled by the word “porn”. This is not that kind of blog! Now do read on.

In a recent issue of my writing magazine, I read an article about how to write about disabled characters sensibly. It covered several pretty good points – person first vs identity first language, don’t use slurs, make disabled characters as well rounded as non disabled characters – but I thought I’d look at one that got me thinking: disabled people being seen as inspiring for managing the simplest daily tasks. Or, as the magazine put it, inspiration porn.

For a start, I should probably differentiate between validating someone’s struggles and achievements, and inspiration porn. We all survive tough times, and accomplish things that we’re proud of, and chances are, we appreciate it when people understand our struggles and admire our achievements. I don’t know about other people with disabilities, but for me, being autistic doesn’t change this.

Then you see articles on the Internet about people with physical disabilities, learning differences, etc., depicting them as being an example to everyone just for getting through life with their condition. Maybe they’re shown doing a normal activity that may or may not be harder for them, leaving everyone amazed that they managed it at all. I remember people at school saying they felt sorry for me because of “that thing” I have. Or they need help or friendship, someone offers it, and suddenly that person is a saint. It seems that everything the disabled person does is either because of, or in spite of, their disability.

Now I understand these reactions are well meant. There are things that are harder to manage when you have a disability or illness. Showing kindness to someone who has one is a good thing. But there will be many things in a disabled person’s life that are just routine to them and/or are unrelated to their disability. We don’t exist solely to inspire others by managing these things. Like pity, showering someone in praise over the smallest thing implies that you don’t expect them to be that capable.

I remember I once touched upon a similar topic: being kind vs being patronising. I said that pity is feeling sorry for someone just because of the way they are, as if that makes them lesser. Sympathy is understanding what someone is going through and supporting them accordingly. Perhaps you could compare it to attitude towards race – I don’t want or need to be pitied or admired for being half Taiwanese. On the other hand, I’m sick to death of racist catcalls, and the more people understand why this bothers me, the better.

Do you see? Stories about disabled people making any kind of achievement may be heartwarming, but to truly appreciate the things someone has mastered, you have to get to know them like any other person.

Am I autistic, or do I have autism?

Am I a brunette, or do I have brown hair? Am I tall, or do I have long legs? You get the point. No? Ok, I’ll explain.

When talking about autism, some people prefer person-first language – that is, saying “people with autism” or “people who have autism”. They say that doing so identifies a person with autism as…well, a person first and foremost, and that their condition shouldn’t be the first thing that defines their identity.

Other people prefer to say “autistic people”, which is known as identity first language. They see it as being a part of their identity that shouldn’t be brushed to the sidelines as if it’s something to be ashamed of, and some autistic people feel that person-first language does just that.

This issue doesn’t just apply to autism, by the way. I’ve heard opinions on this from people with other social and learning differences, physical disabilities, and chronic illnesses. But having had no experiences in those departments, I’m going to focus on autism.

And on that note, what’s my take on this?

Honestly, it’s not something that ever occurred to me to have any strong feelings about. To me, they are just different ways of saying the same thing. If I’m talking about myself, or just generally, I will use whichever one pops into my head. Don’t get me wrong, if a person on the spectrum – or with any other condition – said they have a specific preference, I will respect that and use whichever way of phrasing they are more comfortable with. But I don’t want to be told by a non-autistic person how to describe myself.

To me, the exact phrasing someone uses isn’t as important as the bigger picture of how they treat me. Whether they talk to me like an adult or a child and whether they approach me with an open mind or preconceptions say more about how they see me than whether they say the A word first or second. Asperger’s Syndrome is a form of autism that is equally part of my identity and not all of it.

Besides, it doesn’t need to be mentioned every time you talk about me. I’ve heard people tell stories about their “autistic child” or their “friend with autism” in which the condition is of no significance. It’s one thing to mention it if it’s relevant to your story, but if not, I would rather just be known as “your child”* or “your friend.”

To conclude, I feel I should add that I do not see my stance as being any more right than anyone else’s. It’s just how I feel, and I think we should all be free to describe ourselves the way we want, without feeling like we have to conform to the same preference. I see both sides as being valid and personally feel disinclined to take either one. I am autistic. I have autism/Asperger’s. It’s a fact. But it doesn’t define me.

 

 

*If you are my mother or stepfather. Otherwise that would be creepy.

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.

 

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.

 

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

 

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.