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?

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10 assumptions I have had to deal with

Oh the joys of being a mixed race, autistic woman…

1.  I got into a conversation with someone at a church I went to a while back. Having briefly mentioned I have Asperger’s, they asked me if I had ever been to uni. Their response when I said yes? “And what did you study? I bet it was Maths, Science, or IT! All autistic people I know did something like that.”
2.  I was walking through town one day when an older woman – a complete stranger – tried to offer me Chinese literature.
3. Someone once asked my mum if I could talk.
4. At least one person my mum has spoken to has assumed I must be prone to rage and aggression. The irony is, many of my problems at school and uni were a result of me being a complete pushover.
5.  I mentioned on a job application that I’m half Taiwanese and was born in Taiwan. Despite me also stating that I live in the UK, they contacted me asking what time would work for an over-the-phone interview, given the 8 hour time difference between here and Taiwan.
6. At primary school, a couple of kids in the year below me came up to me and asked – completely seriously – if I had brain damage.
7.  Someone at church who I’d never met (not all Christians are prone to things like this, I assure you), came up to me and asked if I spoke English. On realising I did, they then told me that they had met a French student, and were trying to find other foreigners for this student to make friends with.
8. This was more about my mum than me: when I first started school, my teachers noticed something was different about me. Rather than considering autism, or any learning difference to be a possibility, they were sure it was a result of having a recently divorced mother. When they arranged for me to be seen by a doctor, or a psychologist, or someone along those lines, the person in question tried to get me to take my clothes off so they could check for bruises! To which I replied: “But it’s rude to show someone your knickers!” I made my mother proud that day.
9.  When I studied French at secondary school, I was put in the “mixed ability” class. I spent the next 5 years feeling frustrated by how basic the work was, and trying, with my parents, to get the teachers to move me up a class, only to be told I would not be able to cope with being in top set. Weeks before my GCSE French exams, I was moved up a set, and passed my exams with a high B.
10.  At uni, I joined the choir, only to find the communication impossible to keep up with and the events we did overwhelming. Choir was supposed to take priority over any other non-study related things in my life, yet I felt completely invisible there. I tried to get through to the leader, but as friendly and well-meaning as they were, they were sure I was doing fine because they hadn’t noticed any struggles I was having and were sure I must be doing fine.

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.

If neurotypicals were the minority

A few years ago, I wrote a blog post about neurotypical people – people without autism or any learning difference, that is. It was satirical, it was perhaps a little patronising, and it gave a jokingly serious, article-style description of neurotypicals, mirroring many Asperger descriptions I had read. Not everybody got it though, thinking that I was describing an actual condition. I guess I need to up my game!

If neurotypicals were the minority, it would count as a condition. If they were the minority, we AS people would still have a hard time understanding them, but hey, as the majority, it would be easy to dismiss non-autistic tendencies as weird. If they were the minority, they would need to fight to be understood. So from years of observation, this is how I would explain neurotypical people.

• Fewer touch boundaries. As a person with Asperger’s, I’m very easily startled by touch, so physical affection is something I share with people I am already close to. For many neurotypicals, patting someone on the arm while talking, or moving in for a hug after one meeting is common bonding behaviour. They’re being kind, and with that in mind, I try to let it go. It got awkward at church the other year when a woman I’d briefly met appeared to be offering a handshake, but in fact was about to kiss me. If someone catches me unawares like that, I have to explain: “I’m sorry for any awkwardness, I’m autistic, I struggle to read body language and am easily startled by touch.”
• Not very structured. Many neurotypicals have an uncanny ability to understand what is happening and what is expected of them from vague information from more than one source, and passed around with a whole load of irrelevant details thrown into the mix. They then have no qualms about changing their plans at will without making it clear what the new situation is. Meanwhile, you’re doing your bit at the exact agreed time, only to be baffled when the rest of the plan has changed entirely. *Sigh*
• Reliant on eye contact, body language, and facial expressions for communication. Receiving presents as a child is testament to this, as I mentioned last time. I loved presents, couldn’t wait to open them, and always said thank you to the giver. But because I wasn’t bouncing off the walls with excitement, and looking them right in the eye the whole time, they were quick to think I didn’t like it.
• Good at physical skills. The physical co-ordination of some people is beyond me. While I can just about clap and sing at the same time, some people can do things like dance. Or go hiking on a rocky, uneven surface. Or kick a ball around while dodging other people. Or even do any of the above while giving me a weird look for being unable to keep up. Amazing…
• Have a high tolerance for background stimuli. Whenever I have to navigate a busy city, airport, or large train station, it is beyond helpful to have a neurotypical person with me, because they can lead the way without being mentally thrown off balance by crowds of people pushing by, loud noise, too many things to look at, too much information to try to remember…you get the idea.

So on that note, it’s worth remembering this: non-autistic traits may seem confusing. But they’re not a lesser way of being; people without autism have their strengths, and these are important. And no two neurotypicals are the same. They just don’t always communicate like we do, and even though that’s hard sometimes, we are all different and that’s ok. Now go out there and spread a bit of neurotypical understanding. After a lifetime of being surrounded by neurotypicals…I still have a lot to learn!

 

 

Autistic frustration

One of the many assumptions I’ve had people make about me is that I must be prone to anger outbursts. I don’t remember anyone saying it to my face, but I do remember Mum telling me about people who have thought that. Needless to say, this isn’t the case – Mum has always said if I was any less aggressive I’d go into a coma – but I realise it’s true for many people with Asperger’s and other forms of autism.

Outbursts are often listed as a symptom of autism, which, at first glance, makes sense. Plenty of children and adults experience this, whether due to frustration, sensory overload, stress, and many other things. But then I thought about some of the more basic signs and symptoms of autism in comparison, and I came to the conclusion that anger outbursts aren’t a direct symptom of autism. They’re an expression of built up frustration.

It sounds like the line between the two is very blurry. Put it like this: symptoms of autism are directly caused by differences in the brain. For example: overall high intelligence, but trouble reading faces and body language. Misinterpreting things people say. Different reactions to touch, and other sensory information. Fixation on topics of interest. I’ve reflected, rambled, and ranted about them often enough.

As I write this, I’m thinking about how it drives me mad when people see autism as a bad thing…while feeling fed up with it and wishing it wasn’t an issue. But in a way, that proves my point: autism doesn’t cause frustration. Having autism in a world full of – and made for – people who don’t does.

Autistic frustration is a range of issues in its own right. It comes from spending half your life having to explain yourself, and the other half needing people to explain themselves. It comes from having to work twice as hard just to keep up in social and academic settings made for neurotypical people. Having to grit your teeth when people talk down to you, or make assumptions about you, because you know they mean well, and you don’t want to hurt their feelings. Wanting to connect with your peers but lacking the know how. Then, just to top it all, not having the social skills to communicate all this.

Which, thinking about it, is partly why I blog: while my face-to-face people skills have improved, I still communicate more naturally through writing. It may feel like a chore at times, but it’s still what I do. Besides, it’s important to help people understand. I don’t expect miracles from other people, myself, or my writing. Accepting that sometimes things are different for me is what helps me be less self conscious. And if you can overcome self-consciousness, even if only a little way, you will find it easier to see beyond the negatives.

Being included

My teenage years were quite a lonely time for me. I’m sure I’m not alone in this. I soon got used to sitting in the SEN* room during breaktimes because it was easier than being alone in a crowd of friendship groups. One or two people made the effort to talk to me, and I appreciated it, but mostly I had to put up with other people talking about social events I wasn’t invited to.

If you’re not reading this while listening to some sad violin music, then you should be.

This is one of many struggles for young people on the autistic spectrum. Despite the “unemotional” stereotype, many of us are weighed down by the need for intimacy but difficulty in connecting. Since secondary school, things have improved significantly for me, give or take a few bumps along the way, but when non-verbal language isn’t your forte, sometimes it’s as if people forget you exist.

But while the stereotype that we don’t care about people is usually untrue, it is true that people with Asperger’s can find social events overwhelming. I was reflecting on this recently; I love feeling like I belong, and that people want to spend time with me. Sometimes, however, I get invited to social events where I don’t really know anyone properly, the activity is something I find hard, or I’m already feeling drained. Then if I say no, I inwardly scold myself for being ungrateful when social isolation used to be a real problem for me. If I get left out, I feel lonely. If people try to include me, I shy away in favour of being alone. Right?

The fact is, I always appreciate any attempts to help me feel included, even if I’m not front-and-centre at every social event. A bit like how a person in a wheelchair may want to be as involved as the next person, but might be reluctant to agree to go on a hike. Besides, I’ve been to a fair few events outside of my comfort zone, and actually ended up enjoying them – a few years ago, I wouldn’t be seen dead in a tent, for example! I just like to know that I’ll have at least one close friend I can stick with who understands autism, and opportunities for quiet time.

So if you’re not sure how someone on the spectrum feels about being invited to something, it doesn’t hurt to ask. They may say no, but if they’ve repeatedly felt left out in the past, they may still want to know that they were thought of.

 

*Special Educational Needs