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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On Aspie Pilots

When I first started flying, I was caught up in the excitement of making the decision and it being real, and then the question came up in the medical “Do you have a neurological disorder?” I hadn’t even thought about my Aspergers diagnosis being a problem, and no one who knew me would have suggested I wasn’t competent enough to learn to fly. I can’t pretend to say I know what my instructor thought when I told her there would be a delay and why, but she never let on that she thought any less of my abilities as a pilot because of it.

But at the time, I could find nothing at all on the internet to reassure me that it wouldn’t stand in my way of becoming a commercial pilot. So once that was all resolved, and I had a bit of a soapbox for winning the first to solo prize, I wrote an article for the Women of Aviation Week site, about my experiences with getting my medical, despite having a formal diagnosis of Aspergers Syndrome. I still get messages about it, from exactly the people I wrote it for. People with Aspergers who want to learn to fly but are afraid of discrimination because of their diagnosis.

Aspergers seems to be the unsubstantiated disorder du jour to slap onto every white male serial killer and mass shooter, but all that really is is society trying to “other” the person who did bad. It’s easy if the bad guy is black or Muslim, or some obvious not-like-us, but when it’s a white male for some reason they have to come up with something to place him away from other “good” white males, to explain why he did it. But I’m sorry, being a serial killer or mass murderer doesn’t make someone an Aspie, it just makes them an asshole.

But the result is a deep misunderstanding on the part of general society about what Aspergers Syndrome actually is, and what it means, and that can lead to prejudice and discrimination.

But I still remember my Mom once telling me that maybe I shouldn’t tell people I have Aspergers. I’ve had other pilots tell me I should have lied so that I wouldn’t have to worry about the medical. And I’ve heard from other pilots who have withheld the fact that they have Aspergers, or just avoided getting a formal diagnosis to keep it from being a problem, because they were afraid of being discriminated against. I have even heard about a student who’s being refused training by an instructor who is uncomfortable with her diagnosis, because he doesn’t understand what effect it might have on her competence. As far as I’m aware, he may not even be willing to let her try. I’ve heard from Aspies who can’t get a simple driver’s license in the USA because in their overly litigious world, doctors won’t put themselves on the line to be sued in case that person were to get in an accident and be found not to be medically fit to drive.

The difficulties I do have are mostly in making friends, navigating friendships, being able to tell if someone actually likes me, or if they’re just being nice, or sometimes being able to tell if someone is teasing me or being serious. Noisy crowds and parties burn me out very quickly. Those are the main things I notice that cause me the most problems in my life.

How does that affect my flying? It really doesn’t. The closest has got to be getting along well with my instructor and not being able to tell if she actually enjoys my company as much as I enjoyed hers, or if she was just being nice because I was paying her. After two years I got my answer the day I finished my commercial license and she sent me a facebook friend request with a note saying she had a policy of not friending students on facebook until after she was finished training them.

There are no noisy crowds in the cockpit. Communication in aviation, between pilots and between ATC is very structured and clear. I have a good memory for rules and the million other things you have to remember and notice when flying a plane. It’s a place where the difficulties I have aren’t really relevant, and furthermore, a place that lets many of the strengths that come with being an Aspie shine through.

Which is not to say that every person with Aspergers is capable of learning to fly an aerplane. Some of the common symptoms of Aspergers is being sensitive to loud noises (I have trouble with crowds but some Aspies have issues with any loud noises) and the roaring engine might be an insurmountable problem. Some Aspies might have social anxiety bad enough they wouldn’t be able to communicate effectively on the radio. Another common symptom is poor motor skills, which could affect their ability to develop the stick-and-rudder skills needed to do the actual flying. Some may just have too much anxiety to remain composed in an emergency situation.

The thing is, if you’re met one Aspie, you’ve met one Aspie. Every one of us is different, with different symptoms and severities of symptoms, and strengths and weaknesses.

Almost like we’re actual people huh? Individuals, even. Not every Aspie is cut out to be a pilot. Not every neurotypical (nomal) person is cut out to be a pilot either. That’s something that would be determined based on performance during training, not based on a diagnosis, assuming the student is cleared on their medical.

I haven’t faced discrimination myself so far. The doctor who did my medical stated out loud that he didn’t feel that Aspergers was something that should prevent me from flying. Transport Canada asked for a letter from my family doctor – I’m not even sure what it was he wrote for them, but I’ve seen the guy like three times in my life, I swear, so he couldn’t really tell them any more than no, she’s not on any medications or requiring any counseling or other support – and they signed off on my medical certificate based on that. I don’t disagree with the way Transport Canada handled my case. They were prudent and fair, and they didn’t deny me my medical for no reason. As far as training, none of my instructors treated me any different than other students as far as I know. I’ve been pretty lucky so far. This is Canada.

But that doesn’t mean I won’t run into problems in the future. There are plenty of people out there who will think that I would be better off deleting this post and any record on the internet that I can erase that might tell a future employer googling my name that I’m an Aspie. They’ll say, well Transport Canada knows, you’re legal, you have no restrictions on your medical, you’re not obligated to tell your employers, why would you make it easy for them to find out if they’re likely to pass you up for jobs because of it?

One friend pointed out, well, why would I want to work for someone who would do that to me if they found out?

But it’s more than that. The way people think about Aspies won’t change if we keep hiding and pretending. I’m not saying that every person who’s hiding their diagnosis needs to come out, but the idea that I and others are afraid of how people will react and how we could be discriminated against due to it, makes me angry. So yeah, maybe there will be jobs I’ll miss out on because a prospective employer gets cold feet out of ignorance and misunderstanding and fear, but I feel like I have a responsibility to bullhead my way through that and show them how wrong they are. To paint a new picture for the world of what it means to be an Aspie, in the hopes of making it easier for those who come after me. It’s always an act of bravery to be one’s truest self.

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?