How do I talk about myself?

As an autistic person, one of the things I struggle with is rules changing. It’s not that I can’t deal with things being different. It’s more that when information is passed to and from a number of different people and resources, and there is a bit of uncertainty about how things should be, I find it hard to keep up. And for the most part, I can manage that, and make sense of what’s going on in my own way.

But when one thing that is constantly changing is how we talk about autism, how am I supposed to make sense of that?

When I was first diagnosed, the salient facts were these: I have Asperger’s Syndrome. Asperger’s is on the mild end of the autistic spectrum, thus making me an autistic person. And then times changed, diversity became more widely celebrated, and autism more widely understood. Which are great things. But with all that, there is now a lot of confusion. For me, anyway.

First, there was the whole “autistic vs has autism” debate. Some people felt that calling someone “an autistic person” was defining a person by a label, and not recognising them as a person first and foremost. Then others disagreed; they felt that saying someone “has autism” made it sound like autism was something to be ashamed of when it is a key part of who the person is. I explored the topic myself in an earlier blog, and felt pretty confident in my stance: I will fully respect other autistic people’s preferences, but personally don’t mind either way.

In a similar way, some take offence at the word “disabled”. They don’t want to be seen as less than, and one could argue that autism is only considered a disability because it makes up a minority. Others see no shame in counting themselves as disabled, and don’t let the concept get to them.

And it gets more complicated. I started using the word “autism” more than “Asperger’s” when talking about myself because people seem to understand the word “autism” better. I didn’t, however, realise just how much the term “Asperger’s Syndrome” was falling out of fashion. For one thing, people seem to be just diagnosed with the umbrella term “autism spectrum disorder.” For another, legend has it that Hans Asperger – who the condition is named after – was a Nazi supporter. So people, fairly enough, stopped wanting to be associated with him.

Then there are the “functioning labels” – high functioning and low functioning. These terms give an idea of whereabouts on this invisible spectrum a person is. But people have found that they can be misleading, in that they simply give the impression that “high functioning” autistic people don’t struggle, while “low functioning” people don’t have strengths.

With all these different arguments, it gets confusing. I’m aware that plenty of neurotypicals don’t know how to talk to, or about autistic people, and as frustrating as that can be, there’s no hope if I don’t even know how to talk about autism myself. There are points I agree with and ones I disagree with, and I think it boils down to individual preference. I don’t need neurotypical people telling me how I can and can’t talk about myself. I do appreciate open questions with minimal assumptions behind them. Because autistic people are individuals. And a group of individuals may need to raise their voices together to be heard, but they won’t always shout the same thing.

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 severely disabled autistic child. 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 disabled 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?