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?

Flight School Update: Taildragger Flying

I got to do my first Citabria solo flight on my birthday, August second. The wind was a good strong headwind, gusting up to fifteen knots, but it was mostly straight down the runway, and it was pretty much my sweet spot for wind conditions. Sandra and I went up together first, for a quick checkout, and it seemed like everything was just coming together that day. I did a few landings for her, and they were the best, most consistent landings I’ve done in the Citabria so far. She was happy with four, and sent me back up alone.

Harv’s Air linked an article today on twitter that was quite good, titled Why You Must Fly A Taildragger. It’s a rundown explaining the challenges of flying (mainly landing) a conventional gear aircraft (plane with a wheel on the tail instead of on the nose.) The point it makes it that planes with nose wheels, particularly Cessna 150’s  (and I imagine the 152 I learned on, since it’s nearly the same airframe) and 172’s, and Cherokees, are rather forgiving, and don’t force student pilots to develop piloting skills to the degree that a plane with conventional landing gear does. The precise attitude you get a Cessna 152 in at it lands – doesn’t really matter, as long as the main wheels touch first. They’re not a sensitive to a crosswind pushing the plane across the runway – what pilots call “drift”.

The taildraggers, like the Citabria, they just demand you be a lot more precise in learning to control how fast you’re going, power settings, attitude, controlling yaw – and how each of those elements interacts with the others. And then there’s knowing what to do, and being able to do it in time, without having to think about it, which are two different things. That point where it starts to come without thinking, where you start to react unconsciously, that’s what you need to be able to do. Like when you’re learning to drive, you have to pay so much more attention to everything you’re doing. But once you’ve been doing it for a while, you find yourself pulling into the driveway after daydreaming the entire trip, with no memory of how you got there. And studies have shown that drivers who are driving unconsciously like that, have fewer accidents.

I think I have more trouble with getting my skills to shift from conscious to that unconscious point than some people. I have other strengths, like being able to remember a lot of things, and good recall for remembering things when I need them, and being sensitive to noticing small things. But that getting everything together in the moment and reacting without thinking, I think it takes me a bit more practice to get that down than for others. Luckily, though, once I get it down I have it as well as anyone else.

I wonder if that might be something typical of people with Aspergers, and maybe that’s why clumsiness is one of the diagnostic criteria for Aspergers. It was never one of the criteria that I was diagnosed on – I was never clumsy enough for it to be noticeable, but then I also tend to be very careful, and tend to steady myself against things when I’m doing something. I climbed trees a lot, and was never afraid to crawl on top of something, but at the same time, I had a healthy fear of falling and always kept a good hold on what I was climbing on, didn’t go on anything that I thought had any chance of not holding my weight, and never relied entirely on my sense of balance to keep me from falling, with nothing to hold onto.

Which makes me wonder again, why flying doesn’t terrify me. It must be because I still have the plane to hold on to. Even when we had the door off the Citabria, which everyone else was horrified at, I was fine as long as I knew I was strapped in. I dunno. It seems to be a thing common to pilots.

Article Up On Women In Aviation Worldwide Week Site

Mirelle, from Women in Aviation Worldwide suggested I write an article for them. I thought for a while about what I should write – I mean, that’s the organization that had the First-To-Solo contest, so I should write about that right? But I thought, what’s the most important thing I have to say to the world about my involvement in aviation?

And I realized it’s something that my blog followers have already seen the blow by blow of as it was happening. When I was trying to get my medical certificate, I googled to see how other people with Aspergers had fared in the same process, and all I could find was an FAA article with an account of a commercial pilot’s medical certificate being revoked based on a new diagnosis of Aspergers. I felt pretty alone at the time, and wondered, has no one ever dealt with this before me?

If there had been an article like the one I wrote yesterday – if I could have found that in those weeks, I would have felt so much better. So I hope that if someone else in the world is going through the same thing, that they’ll find this and be comforted and reassured, and if there’s someone out there who thinks that they shouldn’t bother trying because they have Aspergers, that they’ll think again.

Anyway, here’s the link to the article: http://www.womenofaviationweek.org/americas/canada-i-have-aspergers-syndrome-can-i-get-a-commercial-pilot-license/article-450/

Flight School: Quick Update – Second Day Of Training, and Aviation Medical

So I’ve had two 45 minute flights, today and yesterday, each after groundwork. It’s still fairly overwhelming, trying to keep track of all the different things I’m needing to pay attention to. We’ve done straight and level flight, medium and gentle turns, climbing and descending, an today I did a lot of work on controlling airspeed while maintaining altitude. The weather was a tad cloudy, so we didn’t get further, and I had to cancel the other flight because of my doctor’s appointment. But I think I’m getting better. Things are starting to sink in. There’s so much thrown at me all at once, it’s a bit hard not to feel inept, but I’ve had feelings like this before, and usually there comes a point sometime where suddenly it starts to click together and suddenly become easier.  I will have faith in myself.

The doctor’s appointment: I got my class 1 aviation medical done, and it’s sent in. The bad news is I’ll have to wait around three weeks for it to be processed before I’ll be allowed to solo, minimum, because I can’t get a class 4 medical declaration. Why? Because I said yes to one of the questions. For those new to my blog, I have Aspergers syndrome. It’s mild, and I have adapted very well – only people who spend a significant amount of time with me ever notice anything at all, and then it’s only things like  “oh, that’s why arranges her skittles on her desk in lines by colour.” When I tell people, they invariably say that they would never have guessed. But I do have an official diagnosis, and if I were to not declare it, I could get in some big trouble if the authorities were to find out. Not that I would try – I hate having secrets that are dangerous if they get out. I hate being afraid that someone will find out something about me and I’ll get into trouble. It’s just not something I do. But it needs to be reviewed by the powers that be, to make sure that it’s not going to affect my ability to fly an aeroplane.

Dr. Fogel doesn’t think it should stop me. He figures worst case scenario, I might have to go to a psychiatrist and get them to sign off that it’s not a disability that impacts my ability to fly. They might just wave it off, especially since I’m not on any medications. Dr. Fogel had never had a patient with Aspergers before, so he hadn’t seen any precedents, but he thought about it for a second and said he thought it might make me a better pilot, rather than a worse one. And he’s likely right – tendency to notice little things out of place, to prefer routines and process, better than average memory and IQ.

So, I’m not going to worry about it too much, though I can’t say I don’t resent it a little, and if someone else gets the first-to-solo scholarship before I get my medical processed, then there won’t be anything I can do about it. The frustrating thing is that know it’s not something that will render me unable to fly, but it’s someone else who gets to make the decision. It’s not like epilepsy, where, yeah, you don’t want a person with epilepsy flying a plane, and it’s obvious. Or some heart condition that I don’t understand, that someone else has to explain to me why it’s a bad idea for me to fly. No one can tell me how well I cope with that better than me.

On the good news side, I’m entirely healthy otherwise, and though I have a prescription for glasses, I don’t need them to fly. I can read the bottom line of the chart with both eyes, and all checked out besides that. And our bathroom scale is 5 lbs heavy, I’m only 123 lbs. I had to take my shirt off so he could hook me up to a machine (electrocardiogram – I don’t even know what that’s supposed to tell them, but it’s all good.)

Back to school tomorrow for 10:30 though, so I have to get to bed. Hope it doesn’t snow. Or at least that it stops before I’m slated to fly.

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.