Person First vs Identity First Language and Labels: An Autism Post

I haven’t posted anything about Autism Awareness Month so far (largely because the awareness thing isn’t going to make autistic peoples’ lives better without acceptance and understanding) but this topic has come up a fair bit lately in various articles.

First a definition: Person first language means using language that emphasizes that a person with a disability is a person, afflicted with a thing. Some people prefer this way of talking about autism because they don’t like the idea of emphasizing a label, so they say “person with autism.”

Identity first language is language that embraces the label as a part of a person’s identity. Some people prefer this way of talking about autism because it emphasizes that autism is a part of who they are and that they accept themselves as they are, so they say “autistic” or “aspie.”

If you start looking at the conversations going on on the internet, you’ll see a pattern in who prefers person first and who prefers identity first language. The parents of autistic children prefer person first language, because it allows them to say things like “I love you, but I hate your autism,” and lets them love their child without accepting their child for what they are.

Autistic people themselves for the most part prefer identity first language. They want to be able to take pride in who they are. And they want to encourage the world to understand them and accept them.

And another thing I’d like to touch on is parents who know their child has been diagnosed with an autistic spectrum disorder, but don’t tell their child, because they don’t want their child to be labelled. If you take away words, you make it impossible to talk about something. Imagine you’re trying to tell someone you need something to drink, but you have no word for “water” or “thirsty”.

I’ve never understood this fear of “labels” that everyone talks about. I’m not a person who’s married. I’m not a person who writes novels, or a person who flies aeroplanes. I’m a wife, a writer, a pilot. The only time a label becomes frightening is when it’s considered innately negative and shameful. No one fusses over a war vet being referred to as an amputee, and that’s because people don’t think being an amputee is shameful or that an amputee needs to be separated from their disability.

And Autistic people should not have to separate themselves from their diagnosis in order to be worthy of love, respect and understanding.

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Chocolate, Nuts, and Raisins: An Aspie Post

I haven’t posted much about being an Aspie. A friend heard me use the word, and asked about it, because she hadn’t been sure if it was a word that people with Aspergers considered insulting. If it is, I’ve never seen an Aspie who considered it so. I don’t know if it was Aspies themselves who started using it first, or the Neurotypical community, but the Aspie community has taken ownership of the term. Part of the reason, I’m sure, is the fact that Aspies are struggling for acceptance of what they are, and therefore aren’t sensitive about being recognized as having Asperger’s syndrome. You can’t gain acceptance for what you are if you’re ashamed of what you are.

But also, “Aspie” isn’t a word that’s used as a general insult. I think possibly by embracing the term and not reacting to it like it was an insult, the Aspie community has maintained control over it and the meaning it conveys. When it’s understood at all, it’s understood to mean “a person with Asperger’s syndrome” and hasn’t ended up gaining any extra negative connotations the way words like “retarded” (which was once a politically correct term) has collected.

Anyway, in this post, I’m going to kind of try and paint a picture of Aspergers syndrome for you. I’m not trying to show you how terrible it is, or how much I suffer, or what other people have to deal with to be my friend, or even paint a complete picture. Just a little bit of insight on the sort of things my friends notice when they get to know me really well.

I don’t like certain things mixed with other certain things. As a child, I would carefully separate the peas on my plate from the mashed potatoes. Foods dished out of different pots would not be on the fork at the same time. I didn’t like foods served at different temperatures to touch. For example, if salad was served on the same plate as cooked meat or vegetables, I didn’t like them touching. Salad is a bunch of things mixed, but they’re supposed to be mixed, so it’s fine. But I prefer not to get any salad dressing on anything it doesn’t belong on.

And honestly, it’s not about taste. It’s all about organization. And I’m not that bad – if things touch, I’m annoyed. But I’ll eat it. I generally re-separate them if it’s feasible, but it’s not the end of the world, and I generally don’t say anything. I’m not such a severe case as I would have some kind of crazy meltdown over stuff like this.

Nathan once made macaroni and cheese for me, and cooked frozen vegetables in it. He says he knew something was wrong as soon as he saw my face when he brought it out. It took me like, ten minutes to pick all the vegetables out and eat them, and then I ate the pasta. The friend I mentioned before was observing me putting blueberries an whipped cream on french toast she made me, and realized that I was arranging the blueberries in such a way that I could get a blueberry in every bite as I cut it into pieces later.

One day, my friend was commenting on how she hated chocolate covered raisins. I replied that I like them.

And she was like wait, what?

See, she knows me pretty well, and knows I don’t like chocolate with nuts or dried fruit in it. And I explained, chocolate covered raisins aren’t raisins in chocolate, they’re chocolate on raisins.

That’s the point where I think her head exploded.

It’s two things that are such different textures – one you suck on and one you chew, and then I don’t know how to eat them together. And they’re never evenly distributed through the chocolate. One bite might have two peanuts in it, and another one might not have any. So, if someone offers me a cadbury fruit and nut bar, or almond bark, or chocolate with candy cane in it, I’ll usually politely decline. Unless it’s one of those situations where refusal would upset someone, in which case I’ll take it, suck on it until the chocolate is gone, and then chew the rest. It’s not a huge deal.

Then there’s chocolate covered raisins. The chocolate on them is never so thick that it’s worth sucking it off, so it’s easy to chew them without having to suck the chocolate off. But most importantly, there’s a more or less even distribution of chocolate and raisin in each bite.

Now, keep in mind, I don’t normally consciously think about these things, even as I’m arranging my skittles in lines by colour. I just do it. I don’t freak out of suffer unduly if I’m prevented from doing it, it’s just a tendency. Kind of like how when you smile at someone, they tend to smile back. It’s not about Aspergers being a terrible thing I suffer from, and it’s not about me being better than other people because I have Aspergers. It’s just me.

The frustrating thing is that there are people out there who won’t accept this is me. They want me to be normal. It doesn’t matter that none of this hurts or even affects them. It makes them uncomfortable that I’m different.¬†They see it, and when they see it, they think there’s something wrong with me that needs to be fixed. I’ve been called a retard by someone like that, who was just that frustrated that I couldn’t just be normal. Who made fun of me as he watched me eat a sandwich because I was spending more time than he thought I should deciding where to take the next bite. I’ll let the internet pass judgment.

Sure, I could refrain from doing it. Force myself to mix my vegetables with the potatoes. It’s not like it would cause me to have some kind of breakdown. But here’s the thing: why the hell should I? It would take a huge mental effort to constantly remind myself to not do those things, and I would slip up regularly. Why would I go to all that trouble just so that you can watch me and not notice that I’m a little bit quirky? Just so that I can pretend to be some silly ideal of normal, as if it would make me healthier or happier? It wouldn’t.

But it makes me more grateful for the people I have around me who do accept me. I don’t need people to put on an Aspie pride parade for me. I’m perfectly happy just being Lindsay, and being allowed to just be Lindsay and not be made fun of for being Lindsay. That’s all Aspies ask. Is it really so much?

Celebrating Introverts

Someone posted this on Facebook, and it certainly rang true for me.

All of my childhood and adolescence, I was made to feel ashamed for who I was. My parents would get mad at me for pulling out a book while there were other people around, said that I should be being sociable. There was something wrong with me.

They even found a name for it – Aspergers Syndrome. There was something wrong with me that made me this way.

I’ve learned to hide it; learned to cope with a world that wasn’t made for people who don’t want to be at a keg party all the time. A few drinks, and I can handle the noise and the constant chatter and madness of what people call the normal. I can even enjoy it for short periods of time, but that still usually requires alcohol to numb my senses.

Aspergers Syndrome is just the way I explain it to my family when I have to tell them I need to be left alone for a little while.

I’m blessed though, with a husband who gets it, gets me, and is also happy to curl up on the couch together reading books. He’s learned that when I start to get grumpy and snappish, that more than anything, I need to get some writing done, because that makes me feel better.

I have friends now, who accept me and like me for who I am. Not one person said a thing at the new year’s party last year when I was twenty pages from the end of an amazing book when I got there, and sat down on the couch while they played board games, and finished the book before joining the celebrations. No one made me feel ashamed, or like what I did was unacceptable. I didn’t even feel, among them, that I had to hide away in the bathroom or someplace where they wouldn’t notice. No one even tried to drag me away from it.

It’s within geekdom that I’ve found these people, which seems to be a unique place where people are accepted in ways that they are not anywhere else. On average, people who cluster into these social circles tend to be the most tolerant people in the world, from abhorring racism or intolerance of alternative sexualities, to tolerance of social quirks. Granted it does end up leaving space for some people to be jerks, especially since it tends to be dominated by males, but the females that end up there are often the women would describe themselves as usually getting along better with men than other women, and that seems to be the sort of women I get along best with.

It’s been a healthy place for me to grow, and I’d like to thank all of my friends for being exactly who they are.