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.

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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

 

Communication confusion

If someone were to ask me to briefly summarise Asperger’s Syndrome – not that they often do – I would put it like this:

– Difficulty reading faces and body language
– Difficulty interpreting things people say, especially instructions
– Poor physical skills
– Above average IQ
– Detailed long term memory
– Good at learning – and correctly using – spoken language

But in a specific situation where I have misunderstood something and fallen short of expectations, I can’t explain what I’m confused about, or what went wrong. Other people will ask me why I struggled with something that they probably see as blindingly obvious, and so often I’m left feeling stupid because I just can’t explain.

Often it’s the same with smaller, more mundane things. Why do you not join in with the group conversation? Why are you so easily startled? Why do you still need help finding your way there? In response, it would be so easy for me to reply: How do you find so many things to say to all those people? Why aren’t you startled when someone behind you pats you on the shoulder? How can you memorise a route you’ve only taken once while following other people? But these aren’t answers, because – apart from “I’m autistic” – I don’t have any.

In these situations, people asking about Asperger’s is fair enough. The hard part is answering those questions. How do you explain the way you are? It’s like trying to explain what your own accent sounds like! And when people expect you to communicate why you’ve misunderstood someone, the irony is that you have a communication disorder, and can’t explain any better than they can. Because part of being autistic is struggling to see how you come across compared with others.

One of the things I find hardest is unspoken expectations. Despite the autism stereotype, empathy has never been a struggle, and I have even learned to use it to pinpoint people’s emotional needs. But when I’m in a situation where there’s pressure to perform well – practically or socially – and pick up things that haven’t been explained, I’m completely lost without clear guidance on how to manage the situation.

And that’s not to say that AS renders you incapable of communication. We just process things differently, and who’s to say “differently” means “worse” anyway? We take in information in a concrete, logical manner, accompanied with a lot of careful thought, and in a world where most people instinctively know what’s expected when given ambiguous information, we are in a minority. So while we power through that world, and keep honing our non-native neurotypical* language skills, please bear with us!

 

 

*Non-autistic

Having a joke

Some years ago, I shared a funny video on Facebook about preconceptions autistic people have to deal with. “Can you count the handful of toothpicks I just dropped?” “Are you like Rain Man?” “Have you tried dolphin therapy?” You know, the usual. A friend of mine commented – not entirely seriously – “But Grace, people with autism can’t find things funny…” To which I replied “Of course not, what was I thinking? I’d better get back to counting my toothpick collection!”

My sense of humour often catches people by surprise. Which I can understand; I’m a gentle, fairly introverted young woman on the autistic spectrum, someone will make a joke, then before they know it, I’m explaining to them that my seemingly serious reaction was, in fact, sarcasm. When someone I’m with is being silly, I don’t laugh at them, I act like I am silently judging them. When I do or say something silly, I will make a deliberately transparent attempt to act like nothing happened. Or I will just pretend to think I did a brilliant job of whatever I was trying to do.

Actually, as you may have noticed, many of my jokes are about how autistic people can’t make jokes. I would say that one never grows old, but how can a joke grow old when you can’t even make one in the first place? And I did it again…

People with Asperger’s, and other forms of autism, are known for not understanding humour. I should be careful to not dismiss this as a stereotype, because I’m aware that many people on the spectrum take longer to learn things like that. We instinctively rely on spoken language for communication, and sarcasm goes directly against everything about communication that we try so hard to remember. The words say one thing, the voice says another, and somehow people find it funny. When you dissect it like that, it sounds far from logical.

Personally, I see humour as being one of those things that can take longer to learn, but isn’t impossible. I’m not entirely sure how I picked it up. I feel like I’ve developed the ability to see the funny side of a silly, or ironic, situation. I’ve not only learned how to recognise dry, deadpan remarks about life, I like to think I’ve perfected the art of it in my own way. Yet even now, I occasionally struggle. If someone says something that could, very plausibly, be true, I do get confused, particularly when I’m already overloaded. Or maybe I know someone is making a joke, but I don’t know how best to respond.

People like someone who can laugh at themselves, and in situations like that, if you can gently make fun of your own awkwardness, you can smooth things over. A lot of the time, though, perhaps it’s best to just explain that you have Asperger’s and you don’t always recognise jokes and/or know how to respond. But if you are well used to joking with others, and tired of people assuming otherwise, you have to laugh at the irony of them trying to wind you up thinking jokes are beyond you while not noticing you sarcastically playing along with it. Because few things in life are more satisfying than beating other people at their own game.

The best you can give

When I play my violin at church, there are days when I pick it up and the music just comes naturally. I can sight read, play by ear, read guitar music, no problem. My debut at a new church worship band at the Maundy Thursday evening service, however, was one of many days in which I misread the music, kept hitting the wrong notes, and couldn’t harmonise to save my life. I was tired and anxious, and although I got a fair few compliments, I still felt unsatisfied with my performance.

At church, as with many areas of life, I’m often in awe of people who bring everyone together effortlessly, or give a flawless talk, or are more musically gifted, or…you get the idea. I have watched several friends take a lead role in a service, or other event, and afterwards, reassured them that they did it so well, and that no-one would have noticed they were struggling. They might struggle with anxiety, they might speak English as a second language, they might think they don’t have the right personality or skills, or their circumstances might have made it hard. The audience, however, are unlikely to be judging them, because whatever they are doing is important.

I tell them this while wishing I was as gifted as them. Often the way, isn’t it, when you forget to retain your own advice. And remembering all that is easier said than done, because we cannot guarantee that we will not get a negative reaction. I’ve made all too many autistic social slip ups that have – at best – resulted in odd looks, if not hostility. But when we have a job to do, and we want to do it properly, we don’t have to let our weaknesses stop us.

We are all the same in that we all have weaknesses. A mix of character flaws, things we’re not good at, or even just our current mindset. Living with Asperger’s, for all its fine qualities, is a daily reminder of that. Literally, at times. You misinterpret people, you melt down, you have poor physical skills. Yet just because we take longer to learn some skills, it doesn’t mean we can’t learn, or that we should shy away from challenging situations. Sometimes we are acutely aware of our struggles, sometimes other people can see them more objectively. Either way, the very essence of doing something for God and the church – and the people in your life – is giving them the best version of you that you can give.