I know this sounds like it's going to be a really intense/hardcore post, however I'm actually about to take a nap so this is very scattered (I was going to be like "I'm writing some thoughts that I'm going to expand later"--but actually I'm just going to write everything I think in as disorganized a way as possible)
1. it is one thing for another ASD person to refer to me as "autistic" (or "Autistic," which I find weirdly touching) but it's quite another to be in a psych class and have my teacher talking about "autistic kids" in a very othering way. And I can't help but feel that if she said "kids with autism" it couldn't sound quite as othering as it does. And I find myself always, always saying "kids with autism" (or "people with autism" when I'm not talking about kids)--although I'm totally fine saying "ASD kids," "PDD kids," "disabled kids"--well, sometimes I say "kids with disabilities" but it's more just because I like the sound of it or something. But "kids with autism" is actually a phrase that's important to me, I don't think I would ever use the phrase "autistic kids" in class, and maybe not at all.
2. furthermore, the word "autistic" used as a noun makes me uncomfortable.
3. I should mention that I'm obviously not trying to criticize anyone else's word use, in fact I know that my frequent (if far from constant) use of person-first language, and the fact that I identify as "ASD" instead of "autistic," are probably minority ways of using language among ASD people who share my beliefs. Just sorting it out for myself, and not trying to say that I think other people are being offensive (I mean, I hope it's apparent that I respect and admire the work of many people who use that kind of language--including the person who I am parodying in my post title, of course).
4. my discomfort with the word "autistic" could be related to the fact that it's a really fucked-up word. In case you couldn't tell, the word autistic means "really into yourself." This implies a bunch of really offensive stereotypes about ASD people which are very pervasive (pun intended) and, I think, very dangerous. In one of my psych textbooks, the illustration for the "Pervasive Developmental Disorders and Schizophrenia" chapter is a photo of a little girl kissing her reflection in a mirror. My professor recently said "autistic kids see other people as objects and only want them for what they can get from them," and this is far, far, far from the first time I've heard a statement like that in my life.
5. well, that is not what I'm like and it's not my belief about what other ASD people are like either. Some severely ASD people may not be running up to other people and hugging them and saying "I love you," but that's the case for a lot of people with severe disabilities, and it doesn't mean they're incredibly self-centered, it means they're severely disabled. Lots of severely disabled people do care about other people, and it's hateful and dangerous to claim that they don't. It's just weird to me that, for example, the word "idiot" is considered by some disabled people to be offensive because it used to be a clinical term for intellectually disabled people--and yet no one is upset by the word "autistic," which has a very obvious root in the word "autos," and seems to me to be clearly offensive. I mean, I know we can't examine everything, but this seems like such a major thing.
6. then the question is, why am I calling myself ASD when ASD has the word autism in it? Who the fuck knows. I guess because I feel like when I'm saying "I'm an Autism Spectrum Disorder person" it sounds like I'm saying, "I have a disorder/am disordered, the name of my disorder is Autism Spectrum Disorder"--not straight out, "I'm autistic [self-obsessed]." Also, the word "person" is in there, you know? You do not hear professionals saying "person," you hear them saying "autistic kids" and (when they remember us) "autistic adults" and so, so frequently, "individuals," "clients," "consumers"--well, fuck that, what about HUMANS WITH DISABILITIES? You know, LIVING BEINGS? With feelings and stuff?
7. even though the word "sufferer" is obviously awful, do you agree that there's a difference between saying "a cerebral palsy sufferer" and "a guy who suffers from cerebral palsy?" Because those feel worlds apart to me, and I almost don't mind the word suffer that much in the second phrase--like, it's obviously incorrect, but there's a difference between something where I'm like "well, actually..." and something that makes me feel really uncomfortable and alienated from the person who said it.
8. I call myself: an ASD person/a person who has ASD/a person with ASD; a disabled person/a person who has a disability/a person with a disability; a stimming person/a person who stims; a developmentally disabled person/"/"--except, I mean these are the things I call myself in situations where I feel I can use those terms and be understood. I very occasionally say "autistic" when I'm speaking, because it's easier, but only to people I know really well. When I feel like I can't use any of the terms I like, I say "Asperger's" with it sort of sticking in my throat, or I say "I have autism"...
9. ....and, I just used up my whole nap time. SHIT.
Interesting, I am going to reply to this (and I am not attempting to sound argumentative or offend you, so if i do let me know. I like to have thoughtful conversations, and stuff so .. let me know how i sound.)
ReplyDeleteWith the whole "I am a person with Autism" thing can sound a bit odd as well, and I don't really mind being called "Autistic" or "Person with Autism." I don't really find it offensive or whatever because I don't think it's meant to be. However I do have a few things i want to say well.. an opinion I have.
There are many things that people use for a noun like thing, I mean to me saying "Person with Autism", is like saying that the Autism can just magically go away when you want it to when in reality it can't. It may be less apparent, but its still there. I mean you don't go, "Person that's a girl", or "Person that is a Christian," or "Person with homosexuality, or lesbian or gay." For example, cancer can go away slightly so it isn't always apart of them like "Person with Cacner" is well truthful cause the cancer can go away, I don't know maybe I am really bad with all these weird word usages and just can't connect certain things. I'm certain that doesn't make sense at all, so I hope I didn't confuse you with that huge paragraph and that I didn't offend or anger you.
I can come across as a very, very selfish person. I am not afraid to admit that I am quite selfish and I never saw that as a bad thing, maybe part of it is my fault but a lot of it just isn't and it's what society views as "selfishness." For example: I still need a routine, and if it breaks I totally flip out and the entire day generally will not happen because I cannot function in a lose-schedule like way, people see that as me being selfish because I am not willing to bend for others. It's not my fault that I have meltdowns over missed schedules/routines, or certain sensory problems that make it impossible for me to do anything. I also have sharing problems (I have tried to improve on this, I really have and sometimes I do well but there are times where I literally have a huge meltdown because someone asked to use something from me at the wrong place and wrong time and then I get very upset and can't explain why I'm so upset and then get told I'm a very selfish person.).. I've learned that being selfish isn't that bad of a thing.. or that's what my psychiatrist, pscyhologist and Mom say. *shrug*
yeah but I feel like that's not selfish, or not unusually selfish, the issue is you need routines. there are lots of things that non-disabled people aren't willing to do for disabled people but that's not considered to be selfish because our society thinks that being non-disabled is normal/better. If you're demanding things that other people think are a big thing to give, that may just be because your disability leads you to need different things--not because your disability is selfishness.
ReplyDeleteI mean, people who are minorities are often called selfish, like it's considered "selfish" for a person to be openly gay if it upsets their parents for them to be gay. I'm not saying that your self-identified selfishness is completely socially constructed, but it seems to me that everyone is selfish, and even if you happen to be unusually selfish, I don't think that the core of your disability as an autistic person is selfishness.
anyway, I'm definitely not offended that you disagree because I know I have a minority opinion when it comes to this issue.
I am taking a Study of Disabilities class, which is supposed to be all about deconstructing ableism and all that, with a super-emphasis on using people-first language. We do a lot of reports in front of the class, and it always strikes me as odd that when talking about other disabilities (Down's syndrome, CP, PTSD, etc), my classmates always say something like "This awesome little kid with ___." Yet when they talk about ASDs, it is still almost always "This autistic kid."
ReplyDelete"autistic kids see other people as objects and only want them for what they can get from them."
I hear this all the time, too! I hear it waaay too often from "colleagues," clinicians and teachers, and feel like I have to correct them all the time because they don't know any adults with ASD who can tell them otherwise.
see, that really bothers me. and it's just like--I mean, it is really weird, I feel weird saying this given that most ASD people who are involved in disability rights are very into saying "autistic" and "autistic person." But in a setting where a bunch of other people are talking about ASD people from a distant/professional perspective, the word "autistic" can sound almost brutal. It's true that person-first language implies that the person is over here and the disability is wayyyyy over here. But professionals talking about "autistic kids" and "autistic individuals" just make it sound like there's no person anywhere, just a lot of ~AUTISM~.
ReplyDeleteI really love your blog by the way, I don't know if I have expressed this, but I think about it a lot, especially "Ghetto PECS." I hope I can do something like that for someone someday. (Like, I keep thinking about the kids from the class I get to observe in once a week; they just seem to understand a bunch and they can all move their arms so I just don't think it would be very difficult to try to set up some sort of AAC for them. I bet they would be calmer and happier and stuff. But it's not like I can just bust in and try to take that kind of initiative when I'm only there an hour a week.)
This is a really interesting post, and you're right to point out that the word "autism" itself is derogatory.
ReplyDeleteI personally don't like person-first language for autism for the reasons that Mini mentioned. Autism is not an accessory that can be removed at will, nor a disease which can be recovered from. It is an inextricable part of someone's identity, and saying "person with autism" is IMHO like saying "person with femaleness." To me, a key point is the fact that autism as a tangible object doesn't exist. Some people talk as though "autism" is an actual entity fogging people's brains and preventing us from being like "normal" people, but it's not. Autism is just a word used to describe a particular pattern of neurological differences. It isn't tangible in the same sense as a blouse, or a tumor.
I see what you're saying about people using the term "autistics" in a derogatory and dehumanizing manner. But couldn't that happen with any term? I've sensed a lot of condescension from people who speak of "people with autism" or worse "people affected by autism," so I don't tend to like those terms so much. I've once heard "people experiencing autism," but I'm not sure how I feel about that, either.
I'm sort of drunk so this may not be extra coherent. but I should mention I sometimes call myself a "person who is gay" and stuff like that. and I don't particularly like calling myself a "girl" instead of a "person who is a girl" or a "person who is female"--to the extent that I've become comfortable saying "I'm a girl," it's kind of an affectation. And I say "I feel nervous" instead of "I'm nervous"--like, I think I just have a strong liking for dislocated language. So.
ReplyDeleteAnd. I don't know. I guess it could happen with any term, but "autistic kids" and "autistic individuals" just seems easier to misuse. Maybe you have experienced people using person-first language and person-affected-by language in an offensive way, but I guess I've experienced people using person-less language offensively, more often. It could just be related to the kinds of people we know, or something. Can you give an example of that kind of statement--an offensive statement with the phrase "people with autism" in it?
Obviously ASD is an innate thing and it's dangerous to pretend otherwise. But I'm concerned that some people talk about as being almost too innate/personal, like what my professor said--like, I feel like some professionals talk about ASD as though it's a moral failing, as though not speaking or socializing, or having meltdowns, is some sort of course of action undertaken by ASD kids because they don't care about other people, or something.
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ReplyDeleteThank you so much! I absolutely adore your blog, having been possessed by a major internet-crush on you (which I don't think/hope is not as creepy as it sounds). Your writing has contributed greatly to my perspective on disability, and kind of life in general.
ReplyDeleteTrying to bust in on "other people's job" as a teacher/therapist/parent to better the life of their student/client/child is super rewarding. Typically, I make sure I do it at least once a week (which pisses Kiddo's teacher off to no end, I'm sure).