Sunday, January 30, 2011

Coming Out (When "the World is a Chaos")

"Because [people with NLD] lack the ability to take an overarching view of tasks, they experience the world around them as a chaos..." --Wikipedia

Since this is my contribution to the Spectral Amoebas blog carnival, is it okay if it's a little...long? Grab some fried dough and pull up a chair, because an epic post was promised. We're coming out...yet again.

I don't know how much is common knowledge about the autistic experience, but it's true that people on the spectrum have to come out, if they want to be known as autistic. You can't tell that someone is autistic by looking at them. Even if someone seems "off", or doesn't pass as NT (neurotypical, not autistic), it's hard to know they're autistic unless you hear it from them, or you're a professional who's qualified to make diagnoses. I've thought a lot about this coming out process, which is sometimes called "disclosure", but I don't see it discussed enough. Maybe the concept is minimized because of this idea: if you can pass as NT, then you should. Or maybe people who can pass are not "autistic enough" to warrant discussion. I reject both of these assumptions.

I want to be out as a person with NLD (I call us "verbies", although I totally made that up myself), because I want to spread understanding about us, and I feel that life is too short to not be open about important things. But I find it much harder to come out with NLD than to come out as asexual. Maybe it's because while everyone has a sexual orientation, most people don't have learning "differences". And while everyone can think of some people they're not attracted to, how do you explain the way in which your brain processes information? While a lot of people in my life might know I have "a learning disability", I don't think many of them know how it really impacts me. Part of this is due to the fact that NLD is much harder for me to explain than asexuality. My best analogy is that having NLD is like constantly being in another culture that you don't completely understand. With age, you may learn to move more easily within this culture, but it will never be intuitive to you. And, there is no physical place where your own culture exists.

Asexuality means that I'm not sexually attracted to anyone. But is NLD a sub-set of Asperger's? Is it "mild Asperger's", whatever that is? (And these designations are only useful if you're familiar with Asperger's beyond the stereotypes.) Is it a learning disability or a developmental disability? Is it a processing disorder, is it just a different way of interpreting the world? Is it all or some of the above? There is no fictional character with NLD, which is both a bad and a good thing. No one has a friend with NLD to compare me to (I am that friend), although in terms of coming out, that's probably also a good thing.

In addition, the autistic spectrum isn't something that tends to naturally come up in a conversation. In the 9 years since my diagnosis, I can count two or three times. One time, a few close friends were talking about a guy who often behaved inappropriately, and one of the friends said that "he probably has Asperger's". My ears pricked up at this: Mention of autistic spectrum disorder! I should come out now, it might be my only chance for years! But, I shouldn't. I want to describe myself on my own terms.

If I simply state that I'm on the autistic spectrum, most people won't know how to interpret that, especially if their idea of autism is limited to a nonverbal person rocking in a corner. Me, I can pass as an eccentric NT. At least...I think I can. But I don't want to feel like I owe that to the world, any more than I want to feel obligated to pass as an overly picky heterosexual. Maybe I'm just making my life more difficult than it needs to be...but if we don't come out, it will never be any easier to be a verbie in this culture.

Coming out with NLD is also much scarier. It's so scary that I prefer to do it here, in my relative comfort zone of the written word. Although I've written about NLD multiple times on this blog before, it freaks me out anew every time I write about it. Is it just harder to give up NT privilege than heterosexual privilege? An asexual person will still be seen as "normal" by some, if they fit into social norms in other ways. But an autistic person? Not so much. Part of me worries that if people "really knew" how much trouble NLD causes me, they wouldn't know how to act towards me. I worry that if people knew how differently I really think, it would alienate them.

But maybe that's just a baseless anxiety, since I feel like sensible people would more likely be intrigued. People that care will continue to treat me as they always have; it's probably delusional to think that no one has noticed my "differences". Is naming them really such a big change? Yet another reason why NLD is hard to explain are the many conditions that commonly accompany and complicate it, such as depression, anxiety, OCD, ADHD, or bipolar disorder (which also carry significant social stigma and can be very difficult to come out with). The nature of intersectionality is to go on and on. I'm strangely anxious about posting this, even though I'm not sure what negative responses, realistically, I could receive.

In the end, I sometimes feel like I have a certain amount of "coming out cards". With asexuality, I used them all up, even though I was far from done. But coming out isn't just that one-time "let's sit down" chat. For some of us, it may be a continuous and long process, where we divulge more detailed information over time. I am told that for many on the spectrum, our thinking can tend towards "black and white". I can see myself in that description, although the rigidity of my thinking tends to depend on the matter at hand. I used to think that if I could just find a perfect way to explain things to people, then they would understand. But I'm learning that no matter how skilled you are in the art of coming out, understanding is what happens in all the days, months, and years after you've come out. Coming out is only the beginning.


Southpaw said...

I have a lot to say about this topic, actually. First- Asperger's is sort of one of my "topics of interest" I suppose you could say, in psychology. I have excellent "Aspie-dar" I guess you could call it, though I'd never ask someone outright about a diagnosis or label someone without consent (and interestingly enough, I never pegged you as NLD- so I suppose you're good at "passing," to me, at least- whatever that might mean). But yeah, it's a topic I enjoy discussing, if you ever want to!

Anyway, it definitely is a personal choice whether or not to "come out" if you CAN pass. I know this is an issue with Asperger's, but also for other "invisible" issues, like mental illness and some physical illnesses. Like you can definitely "pass" as an NT, the question is, do you want to? Should you have to pass?

I'm a very "militant awareness" kind of person, so I'm out about everything I can possibly BE out about, and that includes mental illness. I know I can "pass" as...I don't know what word to use: "sane"? (Ugh, that gives the wrong connotation though). But anyway, I choose to be VERY open about my issues (OCD, social anxiety, hypersensitivity, etc.) in order to foster awareness. Also to let people see that, yes, I "look" normal and "act" normal, but inside I'm anything but.

It definitely IS harder to come out about things other than sexual orientation though. I feel there's more of a "stigma" about all neurological/mental/physical/etc issues. People tend to think of us as "broken" somehow, rather than "different." Ugh.


Lanafactrix said...

For what it's worth, your revelation of NLD makes no difference in my perception of you--I can't think of anything you've said or written that becomes clearer because of it. I'm not sure whether that means you're really good at passing for NT, or if I'm just not especially observant, or something else entirely.

I suppose what I mean is that I'm not nodding my head knowingly going "ah, THAT'S why she's an ace," which I'd imagine might be a common reaction.

Ily said...

@Southpaw: I enjoy discussing the topic as well, so feel free to send me a message somewhere if you want to! That you "never pegged me as NLD", something bothers me about that statement, although I'm not completely sure what. (Ah, the perils of text-based communications.) Maybe it's because we only met so briefly offline-- I doubt you could have pegged anyone specifically as NLD in that length of time, since most people with NLD don't have any identifiable mannerisms. And as far as I know, the only way to get the diagnosis is to have a large discrepancy in your verbal and performance IQ scores. I also may seem to pass well because although we have different diagnoses, there are many overlapping traits. So maybe we seem more "normal" to each other because of that, which I think is kind of cool, actually. I'm not trying to say that you're wrong and I don't pass. (Although there are definitely situations where I'm pretty sure that I don't. Job interviews, for one.) It's just a hard conflict for me. Because I worry that if I pass TOO well, then people--including myself-- will put expectations on me that I can't meet. Then again, I don't want people to just lower their expectations automatically. I would say my biggest NLD-related issue is executive function (for non-psychologists reading, that's like the "boss" in your brain that keeps you on task), which is a hard thing for someone else to notice. I don't mean to nitpick, honest, just to better explain my POV. (Also, see the next part of the comment for more stuff that might apply to you :-)

@Lanafactrix: Thanks. :-) (Although, I wouldn't think you'd go, "THAT'S why she's ace" way. And I haven't ever gotten that reaction...yet.) To answer your hypothetical statement, you ARE observant, and there IS something else entirely. That is, I choose to associate with people around whom I don't feel excessively awkward. I would imagine that everyone does that, to some extent. Just like some straight people are queer-friendly, there are NT people who are friendlier to those on the spectrum. I don't think this is a decision on their part, but more of a compatibility in terms of values. This is just a theory, but you probably see me as more "normal" because you're not so fussed with enforcing conformity. To you there is a wide range of "normal". The same thing applies to Southpaw; you are not superficial people. Some people take it upon themselves to strictly police social norms, and these people would find many "off" things about me. I've encountered many of these people, but I try to avoid them as much as possible. So to wrap up this comment sometime before 2012, I think that it's hard to ever say that someone objectively "passes well". It really depends on the "audience" and what their expectations are.

Lanafactrix said...

Oh, huh, that's a good point. I wonder if that's part of why all the Doxies who weren't in a sorority ended up as friends--none of us were particularly interested in conformity. (The Tri-Delts totally don't count as a sorority, haha.)

Ily said...

@Lanafactrix: It's funny, when I wrote that comment, I was thinking of the sororities as an example. Because if "passing" wasn't subjective, I would've been equally in demand by all the sororities. As it was, only the TriDelts wanted me to join them. The other groups probably thought I was strange, since they seemed to be more into social norms. That old Groucho Marx quote, "I wouldn't want to join any group that would have me as a member", is probably the major reason we couldn't get enough recruits.

Stephanie Silberstein said...

I have to confess... I don't know what NLD is, and I feel like I should because I taught special education for two years. (I gravitated to a career that would put me in contact with people on the spectrum before it ever occurred to me that I was on the spectrum myself.)

Anyways, coming out is always a process, in my opinion. Whether its asexuality or being on the spectrum or something else, it seems like it's a constant decision whether to tell this person or that person. My experience with coming out about Aspergers has been that more often than not, people say, "I would have never guessed. You seem so NORMAL." and I'm not sure if I like that reaction or not.

Ily said...

@Stephanie: No worries, I should've said what it was. (My Wikipedia link doesn't look like a link, boo!) Nonverbal Learning Disorder (or Disability). I can't say it's a very descriptive name. Yeah, the "but you seem normal!" response is one that means well, but it can be hard for people to understand that for some, appearing "normal" is a monumental effort. The point of coming out is to help people understand you more, but if they just say "you don't look autistic" (or whatever), it's hard to know what they've learned.

Matt said...

I'm happy to have found your blog, and this is a very insightful post. I've experienced my own "coming out" moment as an Aspie, and it does go on and on after the fact. I chose to do my disclosure through my drawings and my writing, which people have responded really well to, and yet they're still very slow to change how they deal with me. There's just so much to explain. So I keep on drawing and writing, at least to help myself, and hopefully others will start to get it.

Ily said...

@Matt: Thank you! I'm glad you found me, too. I checked out your blog and thought your "Batman" cartoon was really funny. I definitely pick up the speech patterns of my environment. If I read "classic" books a lot, I'll start talking more formally, and so on. I disclose asexuality through writing this blog, and it's seemed like a good way to do it so far.

KJ said...

I'm NLD and asexual. It is so rare to know other people with NLD- I've met one other person in my 24 years of life. I tend to be very open about coming out as disabled because I am dyslexic and dysgraphic, in addition to having NLD. And some information about NLD says that it is the opposite of dyslexic, so I don't know how I ended up with both. I tend, though, to say I have 'learning disorders,' and, only if asked, will I explain more. I sometimes think I need little cards to define asexual and NLD, so people know what those things mean. I'm good at passing, but I'm at a place where I don't always want to pass- I want to be acknowledged for the very verbal, very smart, very asexual person that I am.

Ily said...

@KJ: Yeah, tell me about it! I'm 26 and I've only ever met one other person with NLD in "RL". (At least, knowingly.) My other interactions with NLD folks tends to be on this Yahoo group: