neurodiversitysci:

elevine26:

“On the spectrum”

Why do people use this phrase to describe autistics? Is it because they are trying to avoid the word “autism” like it is a slur?

The term “on the spectrum” itself is harmful to the connotation of autistic individuals. Personally, I do not have anything against the word “spectrum” itself, but its connotation. Many associate the word “spectrum” as something linear, when in reality, the word simply implies that there is a variety. Because many associate a “spectrum” with being linear, they begin to measure autism by the quantity of one trait only.

Typically, misled individuals will measure autistics by how verbal they are. And since verbility itself is a linear spectrum, people begin labeling nonverbal autistics as “low functioning” or “on the higher end of the spectrum” and vise versa. This makes people forget that there is so much more to autism than verbility, and that is harmful to autistics.

In summary, the term itself isn’t harmful, but the connotation of it is.

I get what you’re saying.

Personally, I use “on the spectrum” to avoid the issue of whether to say “autistic” or “person with autism” if I don’t know the person’s preference. Mainly, I use it with non-autistic people who expect “person first language” when I don’t feel like explaining why I default to “autistic person.”

In many of these cases, I’m talking to people who already understand that autism is more like a color wheel than a linear spectrum. And if they don’t understand that, I find that well worth taking the time and energy to explain.

(I’m in a clinical program talking to people who’ve all had at least some experience interacting with autistic people, but have gotten some counter-productive training that everyone prefers person-first language. So that’s why my audience has this weird distribution of knowledge).

***

Tangent: I think it’s also worth teaching people that language isn’t a linear spectrum, either! 😉 For example, you can divide language into:

Receptive (ability to understand) vs. expressive (ability to say/write/sign/etc.)

Form (accurate grammar and sentence structure) vs. content (meaning) vs. usage (understanding your audience and speaking in the correct way given the social situation).

And then there’s the fact that a person’s ability to, for example, say understandable sentences depends on their cognitive load. (How much are they trying to think about or pay attention to at once?) I’ve seen people who can tell a well-structured story clearly and grammatically when they’re re-telling a familiar story or using a set of pictures as a cue. But when they have to hold on to the story in their heads while translating it into language, what comes out of their mouths is a mess. I see that even more with writing. So, “more verbal” vs. “less verbal” isn’t really a thing.

Yeah, it also makes it clear that you’re talking about everyone under the autism umbrella. This was more important before Asperger’s was phased out as a diagnosis, but that has only happened in the past few years, and not everyone is up to date on the changing terminology (which is not helped by, like, SBC randomly being like “actually I think Autism Spectrum Condition sounds less stigmatising” and shit like that). Saying “on the spectrum” seems to have become the way for academics (mostly where I’ve seen this use) to make it clear that they’re referring to everyone. Especially if not all of your research participants actually use the term “autistic” to self-identify. I use it anyway with a terminology note, but I can see why allistic academics might find “on the spectrum” (or “on the AS”, which I love because it sound like bad 90s slang) to be a safer term.

Also, just a quick point: the Asperger dx was only phased out under the US-based DSM-5, not ICD-10 as used in a lot of the rest of the world. It’s still very much in common use where I am (page dated Sept. 2018), making the umbrella terminology more useful.

The latest draft of the manual, dubbed ICD-11, collapses autism, Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS) into a single diagnosis of ‘autism spectrum disorder.’

Those changes will no doubt take a while to filter down. I wouldn’t necessarily expect that type of umbrella usage to decrease anyway, especially with it built into the official labels.

clatterbane:

Related to one post from a little while ago, I was reminded of a quote from something I reread recently.

From Every Day Is a Good Day, edited by Wilma Mankiller. With this specific quote coming from her intro to chapter 6:

The women at this gathering speak of love in grand, sweeping terms that embrace the natural world, family, clan, community, and nation. Love is not limited to immediate family or to a romantic partner. It is not doled out in small increments to a socially prescribed person or group of people. It is all encompassing.

LaDonna Harris speaks eloquently about the high value she places on her relationships with others, which she describes as “not letting go of people,” even her adversaries. A Cherokee traditionalist echoes this sentiment and speaks of the need to “live and care for one another in such as a way as to ensure that there will be no reason to let go of others.”…

The larger society’s endless conversation about whether gay and lesbian couples should be accepted and granted rights to marriage, adoption, and other rights was nonexistent among these women. They place a very high premium on respect: respect for oneself, for others, for all living things. It is highly disrespectful to label another human being and define them based primarily on their sexual preferences. These women care more about the human decency and dignity of people, and whether they are a contributing part of the community, than about their adult relationships with others.

(And that would be with some longer term different ideas about what constitutes a valuable contribution to society, yeah.)

I included the longer part before the bit directly discussing labels, mostly for additional context.

But yeah, I have also encountered some people who wanted to assume that a statement like that is exactly the same as the “don’t let yourself be defined by X!” discussed earlier. Very possibly because that invalidating, othering approach is most of what they have encountered up close.

(Very much like the difference between people honestly trying to understand and relate to someone else’s experiences, and the dismissive deliberately not getting it “Oh, everyone does that! ~~And you are making me very uncomfortable by even talking about this, jfc leave it already if you don’t want to totally alienate everyone around you. Weirdo~~” versions. Not at all the same scenario, but I do get the idea that a lot of people are mostly used to encountering the dismissive kind.)

When, yeah, that “don’t let yourself be defined by X!” behavior is one indication of exactly the types of disrespectful “boxes are more important than actual people” attitude being objected to there.

I mean, similar is part of why I have gotten more and more personally resentful of feeling pressured to choose from a certain assortment of boxes. And a good bit of the reason it’s hard to even try to talk about some of this stuff, even if you do make it very clear that the last thing you want to do is dictate how anyone else needs to be navigating or even relate to any of it. That’s still not what some people will hear.

I can understand why certain approaches do appeal to some other people. Not that it would even matter if I didn’t understand at all, because it’s their lives and experiences to make sense of and manage the best they can! The same approach is not going to make sense for everyone, though. It just won’t. And that doesn’t mean anyone is necessarily wrong.

Plus, pegs. It’s hard to even start talking about some things when you are coming at them from a sufficiently different perspective that you’re not necessarily even talking about what a lot of people would assume based on some surface similarities. More complicated when those things are also heavily enough politicized that pretty much everyone involved has been hurt in some way(s).

Not just thinking about the main subject of that quote here, but that’s definitely one aspect where it’s relevant.

Reminded of this again, with some framework that just doesn’t make much sense to me in the first place.

thoughts while driving home from work

moncarnetdenote:

autismserenity:

thegentlewomon:

acephobia-is-real:

mylittlscorpion:

garet-the-3rd:

autismserenity:

sirigorn:

autismserenity:

life-of-a-cherry-blossom:

autismserenity:

If you think of asexual as “not having a sex drive,” then you’d probably be surprised to learn that aces used to be a part of the bi community.

But if you think of it as “not having a sexual orientation,” then it might suddenly become clear.

Because in a world where so many people only ever think of, or mention, “gay or straight” as possible orientations, there’s not that much difference between “not having a sexual orientation” and “not being either gay or straight.”

When the question is only framed as “which of these opposite points does your arrow point to,” I don’t feel like there’s a huge difference between your answer being “point???????” or “arrow???????”

Ohhh, everything makes sense now (says the bi ace)

SWEEET

Which is I think why a lot of aces identify as bi or pan at some point in their lives before landing on “asexual.” If you know you’re not gay or straight, there’s much more awareness of bisexuality than of asexuality, so it makes sense that people would end up there by default.

Yes! And if you were coming out 20 oror more years ago, there was basically zero awareness of any other things.

this perfectly describes my late teens, most of which I spent convinced I was bisexual because I was equally attracted to men and women. Thing is, I actually wasn’t attracted to either, and I thought that that weird uncomfortable feeling I got each time something was overly sexualized was because I wasn’t used to feeling lust and/or arousal, and those new urges were making me uncomfortable, instead of just being plain uncomfortable with sexualization. I didn’t even know that asexuality was a thing until I read about it in a fanfic a year ago.

Chiming in as another aro/ace person who identified as bi for a couple years before realizing the ace spectrum existed. The poster right above me pretty much describes exactly my thought process. Basically, it went:

I’m not gay, and I’m definitely not straight, so I must be bi, because I find people of many different genders attractive (notice i say find attractive, not attracted to). I chalked my icky-squirmy feelings when thinking about sex and to a lesser extent relationships up to lack of experience as I’ve never been in a relationship or even been on a date.

But then in the past year or two I finally learned about asexuality and one night I had this huge emotional revelation when things just clicked suddenly.

So yeah, until recently, bi is where i fit best, and where i felt most accepted.

Up until now I thought “ace ppl were bi/pan?? that makes no sense????’

But reading this I remember–I thought I was bi/pan too!! When I was in high school, I thought I was romantically attracted to men nd sexually attracted to women (I knew almost nothing about gender). I didn’t know about split-attraction so I was horrified of being some kind of freak and doomed to be alone and/or unhappy, to say the least.

People get all offended and insulted and furious about how aces identified as bi/pan, but you need to understand: I only did so because I didn’t know/think asexuality was an option. I wasn’t gay, I wasn’t straight. What else could I be?

At 15, when I was just starting to use the internet to learn about sexuality I came across this: “Bisexuality is the ability to reach down someone’s pants and not care about whatever you find.” And that was, I thought, the closest thing I could find about how I felt.

You might be thinking, “But this is such a wild contradiction to what asexuality is! How could you possibly be bi/pan?” In my experience at least, the logic was something like, “Being bi/pan is an attraction to all genders, but I don’t experience attraction to two+/any gender. Which is similar in that I’m equally indifferent to multiple/all genders. They cancel out, or something? I’m romantically attracted to men, sexually to women, they cancel out?”

When you don’t know what asexuality is, you’re going to come to some conclusions that may make no sense at all to someone else. And they might not make sense to you, either. But what choice do you have? You have to be SOMETHING, or so we’re taught.

And then once I realized I wasn’t REALLY bi or pan, I chose not to identify as anything, since no labels fit me. I thought it would be freeing, not having to worry about labels. But god, it was so lonely. Here I was, some kind of anolomy, brimming with so many questions and no answers. And this is why asexuality is an orientation, rather than a lack of a sexuality. Ahaha, high school was misery in terms of finding my sexuality.

I don’t know, does this make sense to anyone? It’s hard to explain, at least for me.

“I’m nothing” eventually became a common response for me as well.

and gee, I wonder if the feeling of “I’m nothing” contributes to the higher rates of suicidality for a-spec people, like bi erasure does for bi people

for that matter, I wonder if the double whammy of “what I am doesn’t exist” and “what I think I am doesn’t exist”, of bi erasure and the even worse ace erasure, does too

and by “I wonder if” I mean “I bet that….”

I relate so fucking much about everything said in this post. I also identified shortly as bi, then pan, before landing on the “nothing” phase, that made me feel like such a worthless human being. Finding out about asexuality was both a terrifying and liberating experience. It was hard at first coming to terms with it for me, but when it did happen there was this humongous feeling of relief, that I was normal

So when I first found out that asexuality was a part of the bisexual community before splitting up, it made a whole lot of sense already to me. It was pretty logical.

Related to one post from a little while ago, I was reminded of a quote from something I reread recently.

From Every Day Is a Good Day, edited by Wilma Mankiller. With this specific quote coming from her intro to chapter 6:

The women at this gathering speak of love in grand, sweeping terms that embrace the natural world, family, clan, community, and nation. Love is not limited to immediate family or to a romantic partner. It is not doled out in small increments to a socially prescribed person or group of people. It is all encompassing.

LaDonna Harris speaks eloquently about the high value she places on her relationships with others, which she describes as “not letting go of people,” even her adversaries. A Cherokee traditionalist echoes this sentiment and speaks of the need to “live and care for one another in such as a way as to ensure that there will be no reason to let go of others.”…

The larger society’s endless conversation about whether gay and lesbian couples should be accepted and granted rights to marriage, adoption, and other rights was nonexistent among these women. They place a very high premium on respect: respect for oneself, for others, for all living things. It is highly disrespectful to label another human being and define them based primarily on their sexual preferences. These women care more about the human decency and dignity of people, and whether they are a contributing part of the community, than about their adult relationships with others.

(And that would be with some longer term different ideas about what constitutes a valuable contribution to society, yeah.)

I included the longer part before the bit directly discussing labels, mostly for additional context.

But yeah, I have also encountered some people who wanted to assume that a statement like that is exactly the same as the “don’t let yourself be defined by X!” discussed earlier. Very possibly because that invalidating, othering approach is most of what they have encountered up close.

(Very much like the difference between people honestly trying to understand and relate to someone else’s experiences, and the dismissive deliberately not getting it “Oh, everyone does that! ~~And you are making me very uncomfortable by even talking about this, jfc leave it already if you don’t want to totally alienate everyone around you. Weirdo~~” versions. Not at all the same scenario, but I do get the idea that a lot of people are mostly used to encountering the dismissive kind.)

When, yeah, that “don’t let yourself be defined by X!” behavior is one indication of exactly the types of disrespectful “boxes are more important than actual people” attitude being objected to there.

I mean, similar is part of why I have gotten more and more personally resentful of feeling pressured to choose from a certain assortment of boxes. And a good bit of the reason it’s hard to even try to talk about some of this stuff, even if you do make it very clear that the last thing you want to do is dictate how anyone else needs to be navigating or even relate to any of it. That’s still not what some people will hear.

I can understand why certain approaches do appeal to some other people. Not that it would even matter if I didn’t understand at all, because it’s their lives and experiences to make sense of and manage the best they can! The same approach is not going to make sense for everyone, though. It just won’t. And that doesn’t mean anyone is necessarily wrong.

Plus, pegs. It’s hard to even start talking about some things when you are coming at them from a sufficiently different perspective that you’re not necessarily even talking about what a lot of people would assume based on some surface similarities. More complicated when those things are also heavily enough politicized that pretty much everyone involved has been hurt in some way(s).

Not just thinking about the main subject of that quote here, but that’s definitely one aspect where it’s relevant.

deathlygristly:

quill-of-thoth:

aiden17:

ozymandias271:

maddeningscientist:

“Why box yourself in with labels instead of just being you?” is an idea i see a lot and it’s very distressing to me and I’m not quite sure why.

“why are you interested in having words to understand and talk about your experiences”

“Why be able to identify others like you when you can feel different and alone?”

“Your labels make me uncomfortable because they impede my ability to blindly ignore any need for representation or accomodations you may have, and challenge my assumption that MY state of being is the only ‘natural’ one.”

What bothers me about it is the power that the anti-label people give to words. It’s like they think of words that are just a collection of letters that we use to signify a group of traits as these really powerful talismans.

And then when you observe their behavior and how they talk about these words, you realize that to them, yes, these words are powerful talismans, and when you say something that to you is just a collection of letters and sounds that you use to simplify communication about a group of traits, what they hear is…well, I guess it depends on the person and their individual history with that label. But they’re putting a lot more weight on that collection of letters than you are, and they’re investing it with a lot of cultural symbolism and social meaning and media portrayals that they’ve seen and stereotypes that they know but that you’re not aware of, and then they’re unable to separate you as an individual from all the images they have connected to that collection of letters.

I guess, for an example….

Like when I hear that someone has a learning disorder, I’m like “Oh, okay, so you have some traits that fit into this pattern that we’ve noticed and named, and you need some accommodations, and we can try out some ways to help you that have worked well for other people who have shown this pattern of traits.”

It would appear that when the people who give labels a lot of power hear that someone has a learning disorder, they think something like “This person is fundamentally flawed in some manner and they will never succeed at anything that my culture sees as having value, and everyone else will hate them and judge them. Also I can only think of this person now as being this word that is commonly used to describe a pattern of traits that they fit into. I can no longer see them as an individual. I can only see all the images and prejudices I have about this word. The dissonance between my previous view of this person and the view of them that I now have because of this word makes me really uncomfortable, and for some reason instead of changing how I think of the word I will just demand that the person remove the word, so I can go back to thinking of them the way that I did before the word”

And then too there’s people who have more experience with the type of people who imbue words with great power than I do, and so I think their fear of labels may come from that. Like even though they know words are just words, they also know that other people will completely change how they see you and treat you based on certain words, and they don’t want that to happen to other people. Like people who have been diagnosed with borderline personality disorder and who’ve been treated horribly by professionals because when those professionals hear the word “borderline”, they can no longer see the individual in front of them and they can only see all the prejudices and stereotypes that they’ve collected around the word “borderline”, and that leads to dehumanization and maltreatment.

I don’t know. I think there’s a very basic difference in how people who see labels as a collection of words that are useful for communication about certain patterns and how people who see labels as these big huge scary things think about language and how they use language to construct their idea of reality.

Like I know that for me, language is a tool to describe reality. It’s a fluid that can be easily shaped and changed and adapted as needed to fit with the underlying reality, but it’s taken as given that it is never the reality itself. People who give labels immense power seem to see language as a solid, as a permanent structure that defines reality, rather than as an attempt to describe it.

I guess in the end it goes back to all those developmental theories I’ve studied. I should google around and see if I can find a developmental theory that applies to use of language. Because I think that it’s possible that the people who see words as great permanent immovable reality defining things are at conventional/concrete levels of development, and people who see language as more of a fluid imprecise and ever changing attempt to describe reality are at post conventional/abstract levels of development.

I am not really comfortable talking in terms of development, especially given some of the ways similar rhetoric continues to get used. (Even though I know you’re not going in the same directions with it, at all. Not suggesting you were.)

But, those are some very different perspectives, and that’s an excellent description of the “don’t define yourself by X!” way of thinking which has always amazed me. When what they really seem to be saying is “Once I am reminded of certain labels, I cannot think about anything else or see the person they’re attached to as a Real Person”. And that’s somehow the labeled person’s problem.

A lot of that does seem to rely on a very narrow acceptable range of what qualifies as Real People who deserve respect. Propped up by a whole slew of widgets. AFAICT, the weird reification stuff mostly comes straight out of real complicated human beings bashing up against that.

It strikes me as kind of like the people who insist that the world must be literally 6000 years old, or everything else they want to believe about how things work falls totally apart. Only it’s their own sense of worth that’s at stake. If the boxes they’ve been busily shoving the rest of the world into–safely away from themselves–may not be exactly what/how they’ve assumed? It calls a big chunk of their worldview into question. Including a lot of what’s been making them feel superior as Real People.

Even trying to emulate that enough to wrap words around it makes my head hurt. But, that’s the best approximation I can come up with right now.

If anything, that also seems to be a very culturally driven thing. Not just the exact specifications of those boxes, but how important maintaining certain divisions (with whole categories of Unpeople) even becomes to maintaining the status quo. Much less which widgets commonly get used for that, to the point of being hard to recognize as such for the ones relying on them.

Which helps make a lot of things more frustrating, but I have just about run out of steam for now. There were several other points I wanted to at least try and talk around, but maybe later.