Language Wars: Autism vs. Asperger's, Identity-First vs. Person-First

Well, it's been a couple months since my last post, and you might notice that there is a little change in my blog. It no longer is titled Eccentrics United: An Asperger's Syndrome Blog but is now Eccentrics United: An Autism Blog. My corresponding Twitter name (@eccentricsunite) is no longer "Julie the Aspie" but "Julie the Eccentric" (I chose not to change it to "Julie the Autistic" because it just sounded too silly) I implemented this change for a few reasons: 

First, a lot of people who were/would have been diagnosed with Asperger's Syndrome when it was still in the DSM (as opposed to just "autism spectrum") prefer "autism" for themselves. I am hoping this change is more inclusive for said people. After all, all people with Asperger's Syndrome are autistic. It is not, however, a statement of one term being better than the other. Whether you prefer "autism" or "Asperger's" for yourself, I hope that this blog resonates with you. 

A lot of people hate the term Asperger's Syndrome because it potentially serves as a functioning label and because it was named after a Nazi, Hans Asperger. However, the aforementioned have nothing to do why I made this change. Functioning labels are a complex issue (and one I hope to discuss eventually, but not in this particular post) and lots of conditions are named after terrible people. There is no reason why the condition named after Hans Asperger should be singled out.  

The most important reason I made this change is simply because over the past couple years I have gravitated towards describing myself by saying "I am autistic" or "I am on the autism spectrum" instead of "I have Asperger's Syndrome." My personal preference simply has to do with the grammatical imperative that comes with describing Asperger's Syndrome vs. autism, the latter which is more flexible. With Asperger's, you have to say "I have Asperger's Syndrome." With autism, you can say, "I am autistic" or "I have autism." I strongly prefer identity-first language ("I am autistic", "I am an autistic person") over person-first language ("I have autism", "I am a person with autism"), and Asperger's Syndrome does not grammatically allow it. However, I would still prefer Asperger's Syndrome for myself if there was a way to manipulate it into identity-first language. As far as I know, the majority of us prefer identity-first language for ourselves, but if you are someone on the spectrum who is more comfortable with person-first language, then that's absolutely fine! 

I would like to note, however, that all past blog posts where I talk about "Asperger's Syndrome" remain as they were. No retconning on this blog! 

I have made it clear that my preference is for identity-first language. And that is what it is: a personal preference. When neurotypical people use person-first, I generally correct them and tell them that most of us prefer identity-first. They are often flabbergasted, thinking that "person first" is what they're "supposed" to say. That is, after all, what they have heard from well-meaning but tragically misguided neurotypical parents and teachers! The reason many of us prefer identity first is because we feel that autism is an intrinsic part of who we are. We would never say "a person with femaleness" or "a person with gayness", for example. You really can't separate a person from autism, in my opinion. I don't think we are neurotypical people hiding under autism, waiting to be "fixed". 

Am I overthinking this? Possibly. But it is worth thinking about and discussing. It isn't the hill I am going to die on, however. If I correct someone and they continue to use person-first language out of habit, then I let it go. When my mother recently said "people with autism", I didn't bother correcting her because context matters: I knew that it just happened to be what came out of her mouth, not something she said because other people told her to. If most neurotypical people who used person-first did so just because it happened to be what came out of their mouths, it wouldn't bother me. But at the end of the day, I don't want to get hung up on language preference when there are more important things to worry about it.

Unfortunately, I have found that many of us in the autism community get hung up on language use to the point of absurdity. Instead of accepting that some of us use "Asperger's" or "person with autism" for ourselves, people dogpile on and accuse each other of oppression for using a functioning label and internalized ableism for using person-first language. To be quite frank, I am really sick to death of this nonsense. The autism community is eating itself alive with this word policing. Sadly, I got kicked out of a group on Facebook where autistic people answer parents' questions. Why was I kicked out? Because I sent a mother to my blog posts, which I thought would be helpful. However, the admins viewed one of the posts, which had usage of the word "Asperger's" and discussed functioning labels as a complex issue, as "problematic." The irony? It was part of my recent "Is It Ableism?" series.

A friendly reminder: Can We Stop Alienating Each Other?

Is It Ableism? Part 10: Challenging Comfort Zones

Thanks for coming! I'm gradually moving my blog to Substack! You can check out this post there!

Is It Ableism? Part 9: Unintentional Gaslighting

Thanks for coming! I'm gradually moving my blog to Substack! You can check out this post there!

Is It Ableism? Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"

Thanks for coming! I'm gradually moving my blog to Substack! You can see this post there!

Is It Ableism? Part 1: Revisiting the Dark Ages

Thanks for coming! My blog is gradually being moved to Substack. You can check out this post here!

Please Stop Using the Word "Challenges": An Open Letter

Thanks for coming! I'm gradually moving my blog to Substack! You can check out this post here!

Neurotypical Privilege Part 1: What is Neurotypical Privilege?

Jealousy

This is a bit of a follow-up to my previous blog post, "Owning Your Emotions".

You have seen the intensity of my emotions when I become infatuated with someone. I should also note that I get ragingly jealous, but not in the way you think. Unlike most people, I don't get jealous when the object of my affections already has a girlfriend. To me, that makes no sense. Unless the person is polyamorous (or having a secret affair), only one person can be the significant other. It is not something that singles me out. It is something where only one person gets put on a pedestal, and it is a statement about the person, not me. If it were a statement about me, it would be a statement about everybody else who didn't get to be that person's girlfriend/boyfriend. What's frustrating is people don't believe me when I tell them this. They think I'm not being honest with myself. I think if anything my blog posts show just how honest I am with myself.

So how do I experience jealousy when I become infatuated with someone? It's simple. I'm jealous of everyone else who gets to be friends with that person. I, after all, have been singled out as someone not worthy of that person's friendship. And then I become ragingly jealous, to the point where it haunts me in dreams. For example, after Sergio, of my last blog post, stopped talking to me despite reaccepting my friend request a few months after the initial blowup, it was already firmly planted in my head (mostly due to my mother's comments) that I was too "immature" to have friends who were a few years older than me. 

Sergio is a phenomenally talented professional artist: he's a painter, a filmmaker, a musician, and an actor. He even appeared in an opera. There was a photo of him on Facebook performing in the opera, and he and a few friends were commenting on it. I thought to myself, "Opera is sophisticated. I'm not interested in opera. That makes me immature. My parents are, of course, interested in opera because that's what intelligent people have to be interested in." Never mind that around that time I had started reading books about evolutionary biology by Richard Dawkins and others. Oh, no. Not being into opera makes me "immature" and "uncultured". But yes, my mind latched onto that as a possibility of one reason why I did not have Sergio's permission to be his friend. And my mind did not let that go. It doesn't help that I have incredibly vivid dreams, complete with sharp images and convincing sensory input. 

One night I had a dream that I walked into a room and saw my mother effortlessly talking up a storm with Sergio. She was allowed to talk to him and be his friend. I stormed up to her, jabbed my index finger at her chest, and said, "Why the hell do you get to be friends with him?" This dream was a perfect symbol of my jealousy and my anger of what was expected of me. My mother-- who was co-captain of the cheerleading squad in high school; who has always had a very feminine hairstyle, has always worn big hoop earrings and makeup, not because she feels she has something to prove but because these are fashion decisions that reflect her personality; whom everyone loves within nanoseconds of meeting her; who loves hanging around with large groups of people-- was allowed to be friends with Sergio. After all, she was in great contrast to me, the high school track runner who always came in last; the tomboy who hates makeup, rarely wears earrings (and never big hoops), and who felt relieved when she got her first androgynous haircut at age 20; and who does not enjoy spending time in large social groups. No, my mother was the standard of normal and socially acceptable, and I would never meet that standard. And unless I could, I would not be allowed to be friends with people a few years older than me, or even have the privilege of talking to them on an equal basis. No, once neurotypical people reach adulthood, having friends of varying ages is not an issue. And they take this for granted. It seemed that I, on the other hand, was expected to say to myself, "Well, I have Asperger's, so I'm immature, so of course I am not allowed to have older friends. Why would they want anything to do with me? Hey, no problem."

Likewise, when I have had crushes on other people, I have felt a similar jealousy. In college, when my teacher, Doug, lied to keep me out of his class, I was jealous of everyone else who got to be in the class. Not being pushed out of a class is something that neurotypical people take for granted. Oh, and there was the time when I got him an Onion anthology to give to him on the last day of class the first semester that I had him. His response when I tried to give it to him? "I don't want it." However, the following year one of my classmates gave him a Christmas present and he thanked her profusely. She was "normal", so she was allowed to give it to him. I'm sure anybody else who wanted to give Doug an end-of-semester present would have been allowed to. After all, everybody else was allowed to be buddy-buddy with him. There was one particular girl who had this privilege (and no, she wasn't a "hot babe"-- she was severely overweight). She, like my mother, is "sweet", "charming" and "charismatic", things that I'm not. One day, because I was just in such a horrible state of mind over all this, I went up to her and said accusingly and with no small amount of sarcasm, "It must be so nice to be Doug's favorite."

Then at the camp in Michigan there was Joe who went to Gary, Indiana with a friend after promising to go to Chicago with me. I saw him hanging around groups of people but refusing to associate with me and acting like I was beneath him in front of all of his neurotypical friends (all the while assuring me, when we were alone, that he really liked talking to me). I was jealous of all those friends of his who, once again, took for granted things that I was expected to earn. 

I should also note that I don't feel jealousy only when I am infatuated with someone. I have felt jealousy for other reasons. Once, someone who I went to camp with got a book published. It was about "women's issues"-- marriage problems, childbirth, shame of infertility-- and it got rave reviews. I felt a pang of jealousy, that such issues that have been done to death in the past were in a book getting rave reviews. I denied to myself that I was jealous but my unconscious knew better. How? Well, one of my vivid dreams, of course. I had a dream that the author of the book was being interviewed and was getting a princess-Diana style greeting. You've seen the footage of the incessant camera flashes that went off when reporters took Princess Diana's picture. It looked like a strobe that would be dangerous to someone with epilepsy. In the dream that's what was happening to the author of this book. In the dream I also went to my mother about it, and she said dismissively, "Well, this is the kind of thing that women like to read." I want to be a writer, and I would never write something like this.

Ultimately, I bought and read the book to support the author. Ironically, the book was actually therapeutic-- it was about raging jealousy. I was up all night reading it. But the point still remains. I felt like who I was was "wrong" and I would never be who I was expected to be. 

This post has been very cathartic. The issue with Sergio came up last week with my mother (long story as to why) for the first time since it had happened seven years ago. To my surprise, Mom said she had thought about it several times over the years and that she thought Sergio's shunning me was horrible and insensitive. Then she asked me why I didn't mention it if it still bothered me. I said, "Because whenever I tried to bring it up with you, you just shut me down and told me to get over it." She apologized profusely. She also admitted that she was wrong. She told me she was ashamed of how she reacted and admitted that her reaction was humiliating to me and made things exponentially worse. She also admitted that Dad saw with greater clarity what was actually going on. Most importantly, she admitted this: 

"I was blind."

People Just Don't Get It

Note: This is an angry rant, so there will be some swearing. If you're offended by that sort of thing, just read my other blog posts.

This post is an angry rant, because I am pretty fucking angry. It's hard enough to keep a happy, optimistic face for this blog. I want this blog to come across happy and optimistic because I want to give parents hope that everything is going to be okay. But I have to be honest. There is a lot in my life that isn't okay. Sometimes I get so frustrated and angry that I break down crying, thinking, "Where do I even begin to fix this?" And by "this" I mean being financially independent like my peers. I am turning 34 in October, and I still don't have a career or even a decent-sized apartment, let alone one that I can afford on my own. Everybody else my age I know-- and many ten years younger-- has a career, has a decent-sized apartment (or a house, if they're in the suburbs), and doesn't need help from their parents to make ends meet.

"Oh, but at least you're not starving in Africa. You don't know how lucky you are." You know what? You're right. I'm not starving in Africa. So fucking what? That doesn't make my frustration and anger any less real (It's a logical fallacy; I forget what it's called). I grew up relatively privileged, in a white, middle-class household with educated parents. I lived in a relatively affluent suburb in Pennsylvania. I went to college and grad school. Given my background, I should have a career now and be financially independent. But if you have Asperger's Syndrome, growing up privileged doesn't mean shit unless you are born into wealth. I still have to get a career. I have a Master's Degree and am making $12.75 an hour at a temporary work-at-home job. What is my job? Transcribing. Mind-numbing transcribing that any idiot with a GED can do. And because I lost my last two jobs, each after a paltry four months (in both cases they said I was too awkward and made our clientele uncomfortable), to stay in Boston I had to give up my spacious, one-bedroom apartment and downgrade to a studio. It's $1200 a month, and the only way to get any lower in Boston is to live in a basement apartment not much bigger than a walk-in closet with no windows. Even then, the lowest the rent goes for something like that is $1000. The other option is to get roommates, which can bring each person's rent as low as $700-$800 per month. But all my roommate situations in the past have been disasters. My parents even said they would rather help me pay for my own little corner of the universe than take the chance that I would get into some ridiculous conflict with roommates and then have to move out (moving, of course, isn't free).

I know that I'm more intelligent than my employment history and living circumstances reflect but that makes no fucking difference unless you have pristine social skills. And research has shown that the decision to hire someone an any job is almost entirely based on how well they think she'll "fit in" with her coworkers, much more than if she has the talent to do the job. I'm not the kind of person who fits in. It's not that I haven't tried, it's that I can't. Making friends is not an issue for me because I live in a diverse city and can easily find social misfits/intellectual nerds who'd rather talk about psychologically intense topics than how someone's third cousin once removed is doing. But most people would rather talk about the latter, and that's what they expect you to do on the job, even if it is not related to the job description. People know when I'm faking it. I can only feign interest in somebody's third cousin once removed before the holes in my mask start to form. I then have to retreat to my little corner of the universe and do my work. But no. Most high paying jobs expect you to work as a team. I work in groups with about the same ease and naturalness as an asexual person behaves like John F. Kennedy.

"Oh, well have you tried this? Or that? Or the other thing?" Yes, of course I have. I've finished my undergrad 11 years ago. You think I haven't fucking tried? Of course I have, and I've run into one brick wall after another.

Oh, and people have told me over and over that I come off as harsh, angry, argumentative, and even cold.

"You know, the way you're talking to me when you're upset, you're real intense and argumentative and harsh. Maybe that's what's gotten you in trouble at work." No! That's not what has happened! I'm letting my guard down with you. At work I try to hide these emotions. People have told me I'm too "intense" or "harsh" or "argumentative" even when I'm happy or joking around. It's like all I have to do to fucking offend someone is open my fucking mouth, even if I just ask how they are! So you know what the other option is, to make sure I don't offend anyone or make anyone uncomfortable? Not talk. And then I become a fucking stiff and they still feel uncomfortable, but for different reasons.

"Well, you know, you do tell inappropriate and sometimes shocking jokes. Do you do that at work?" 

Yes, I have a raunchy, macabre, and downright absurd sense of humor. I also love saying things for shock value just to see how people react. But you know, I'm not Rainman. I tell the "shock value" jokes you're talking about to friends or on online social networks under an anonymous name, not in a professional setting. My friends laugh, and people online click "like" or write "Hahaha!" I learned years and years ago that there's a time and a place for these things, and work sure as hell isn't it. People at work have called me "inappropriate" for reasons that I'm not sure of but that have nothing to do with the jokes I tell outside of work.

"Well you're very interested in the work of Richard Dawkins and Dr. Kevorkian. You bring those guys up all the time. Are you talking about them at work? You can't do that, you know. They're too controversial."

Yes, I fucking know that I can't bring up these guys or their work in a job setting-- especially not Dr. Kevorkian-- because people at work represent a diverse range of sociopolitical and religious beliefs and I don't know these people well enough to have such discussions with them. I don't feel deprived if I can't bring up Richard Dawkins or Dr. Kevorkian, either. I am at work to do work. Of course, the funny thing is I've heard radically conservative people at work bring up their shocking views without getting in trouble. 

"Maybe you are talking about Richard Dawkins and Dr. Kevorkian and you don't realize it?"

I think I'm fucking aware of what topics I'm bringing up. Don't patronize me.

When people-- friends, relatives, and even my shrink-- say these things to me, they clearly don't get it. I know they're trying to help me, reaching for the lowest hanging fruit, so to speak. But after a while it's like I'm hearing a mantra, a list of phrases from a pull-string doll. And yes, when I get frustrated enough, I do explode and curse a blue streak (it upsets them, but they know not to take it personally and I do apologize later). But they don't get it. They really don't. Why? They're coming from a neurotypical perspective, that the only way that I as a white, privileged middle-class American could be in this situation is if there was something I haven't tried. The fact that even my shrink gives these obvious suggestions is very telling. Hell, even my parents only started to "get it" in the past five years or so!

This is my life as an adult with Asperger's. Don't get me wrong: I am happy most of the time. But then sometimes (like last night when I was talking to my shrink) old wounds get reopened. No, they get reopened, have salt poured in them, and are pissed in. And I get angry and explosive and cry. Sometimes I just can't take it. Working out usually helps a little, but recently I injured myself while running and I can't do much of anything in the way of vigorous exercise until I heal. 

I'm angry. I'm hurting. I'm cynical. I'm frustrated. I have Asperger's Syndrome.

Independent-Living Prospects

I am fed up with people asking me what I do for a living. 

It's one of those questions that begs the question. That is, people assume that because I am thirty-three I must have a career. But I don't have a career. It's just one of those aspects of life that is taken for granted. When people ask me what I do for a living, they are making a lot of unconscious assumptions: They see that I am a white, middle-class American. Most likely my life was uneventful. I finished high school, went to college, got a job that I have been working at for ten years or so and, possibly married with kids, am living happily ever after (fortunately I am living in an era when, and a city where, marriage and children isn't one of these assumptions). When they make these assumptions, they assume, too, that I am neurotypical, even if they have never heard of the word. These are some of the many assumptions that people make about every other human being on earth, and only recently have they been brought into question. 

People who know me and know my situation tell me to "think positive". It's easy for them to say, of course, since they are neurotypical people who are not stuck with the sometimes-torture chamber that is my brain. They haven't gone to school, constantly been between jobs-- dead-end jobs, that is-- realized that their degree was useless, gone back to school, gotten a Master's Degree, taken two jobs related to that degree and been fired from both of them because of issues related to interpersonal skills, and then realized that that they have yet another useless degree. They do not understand the turmoil I have had to live with practically from the dawn of my consciousness. And their suggestions to alleviate some of the problems related to living independently actually do not work for me. They take it for granted that these suggestions would work because they would work for most people. It doesn't even occur to them that there are some people for whom these suggestions would be harmful.

What suggestions are we talking about exactly? For example: 

1. Until you can get a permanent job (yes, like WHEN?), why not take a job in retail? At least it's some money!

No. I can't take a job in retail. I was just fired from two jobs that involved working with the public. I can only put a fake smile on my face and pretend to be interested in everybody's personal lives before the holes in my facade start to form. People can see right through that. Besides, it's too emotionally exhausting for me. This isn't a matter of "won't", but a matter of "can't", in the same way a person with an IQ of 75 can't do calculus. This is just not who I am, and I have tried it.

Just for the record, I do have a temporary work at home job. It does not pay well, however.

2. Get a roommate so that you can save money. It will also be less of a burden on your parents.

Yes, it's true. My parents are helping me to live in Boston, just as they helped me to live in New York City. My mother is retiring next year, so unless I find something within the coming year, I have to move back to Pennsylvania to live with my parents. In the meantime, I am downgrading from a one-bedroom to a studio apartment (fortunately in the same building) on August 31st. I sucked it up and got rid of a lot of books and some furniture so I can comfortably fit in this smaller unit. My one-bedroom is $1425 a month and is set to go up to $1500 this fall. The studio is $1200 a month. I actually did try getting a roommate. I met a fellow Aspie over the Internet. We hit it off immediately and started making arrangements to get a place together. But he and I got into an argument over something really stupid and realized it wouldn't work out. Before meeting him I met a few other potential roommates. None of them picked me. I am sure I would be difficult to live with. I have my own habits, my own way of doing things. This is very typical of people with Asperger's. Plus, when I was in college, nearly all my roommate situations ended in disaster. Even my parents agreed that they would rather sacrifice some extra money to help me rent a studio than hope that a roommate situation to which they wouldn't have to contribute financially would work out.

3. Move to a suburb. It's so much cheaper!

Yes, it is not only cheaper but also a lot less diverse and accepting. In places like New York and Boston, I feel comfortable and make friends with ease. It is hard to meet people as accepting and open-minded in a suburb, even in comparatively liberal suburbs such as the one in Pennsylvania where my parents live. Plus, think about this: If some employers in a city are uncomfortable with my personality, it would probably be much worse in a suburb. My job prospects would likely not be any better, despite the lack of competition. 

4. Why don't you try [insert job prospect here]?

I already have. I have been down so many paths that it is almost laughable when others make suggestions, thinking I actually haven't tried them. That's another assumption: People assuming that I don't have a career because there are avenues that I haven't thought to explore.

In short, I am beyond frustrated. I live in Massachusetts, a state that famously has the most resources in the U.S. for adults with Asperger's Syndrome, so that is making me hopeful that they can assist me with finding a job. I am, however, not optimistic. I like to think that my blog posts give people hope, but sometimes I have to be honest: Life with Asperger's often does not turn out the way it did for Temple Grandin, for example. Most people with Asperger's-- women especially-- struggle to make ends meet in adulthood. I've heard of brilliant people working as janitors or doing some work that doesn't reflect their intelligence because they can't get through a job interview. Or they get through the interview and can't hold the job because of conflicts with coworkers and their bosses. Right now I feel that my only hope is to get my writing published (I have already finished a book that I am shopping around and am currently working on another). But even most best-selling authors have to have day jobs to make ends meet.

To those of you who brandish big smiles while telling me to "think positive", please walk around in my shoes for a day.