Nikki is someone with whom I've been discussing the use of "autistic" on Twitter, a conversation that I Storified here. She has also contributed a comment to yesterday's post.
As I noted in a comment response on that post, the difference is that autistics have themselves expressed a preference for this term and use it. When a minority community takes ownership of the term (this isn't the first time that's happened; see "queer" or the N-word, which I still can't bring myself to type), the non-minority community doesn't get to determine that it's not OK for them to use it. I'm not aware, however, of anyone's in the disability community having co-opted terms like "retarded" as their own.
Most autistics I know have expressed that their autism is who they are and that therefore, they refer to themselves as autistics, regardless of the perceived baggage it may carry on the part of people who are not autistic. It's the other people, not the autistics, who bring that baggage. The autistics who describe themselves in this way are using the term as a mark of pride. Autistic people get to make this decision because they are The First Persons.
Nikki has her own take on this issue and has blogged it here. In that post, she says, "I am not autistic, and so some may argue I don't have a voice here. I certainly applaud those people who are autistic and who are fighting to make terms such as 'autistics' acceptable, but because there is litte or no precedent in English for using plural nouns in this way except for medical or negative purposes, it concerns me that the result will be opposite to that intended. That is, its use will serve to re-medicalise autism. And that would be a shame when so many have done so much good work in advocating the strengths and community of autistic people in recent years."
Nikki has her own take on this issue and has blogged it here. In that post, she says, "I am not autistic, and so some may argue I don't have a voice here. I certainly applaud those people who are autistic and who are fighting to make terms such as 'autistics' acceptable, but because there is litte or no precedent in English for using plural nouns in this way except for medical or negative purposes, it concerns me that the result will be opposite to that intended. That is, its use will serve to re-medicalise autism. And that would be a shame when so many have done so much good work in advocating the strengths and community of autistic people in recent years."
My response to that is that autistics use the term "Autistic" positively for that very purpose. Autism has been medicalized to the point that parents of autistic children find that anything but person-first language is offensive. Autism has been medicalized to the point that autistic people can read and hear words used to describe them that include "tragic," "stolen," "monster," and "afflicted." It has been medicalized to the point that when autistic people themselves choose to use the word "Autistic" as a noun, the response from non-autistics is almost one of sheer horror.
Autistic people don't view themselves as walking tragedies. It's probably impossible to transcend "retarded," a word that intrinsically and incorrectly implies some sort of inability to even understand or be aware of how one would go about doing so and one that describes a single aspect of a person's individuality. "Retarded" isn't an identity; it's a perception based on testing, expectations, misunderstanding of potential, and a focus on a narrow range of attributes that ignores a much larger range of possibilities.
Autistic is different. Autistics transcend and up-end the typical understanding of this word every day, and one way they do so is by purposely linking themselves to its use and using it to represent themselves as individuals. And as Christine Zorn, another commenter on the post from yesterday observed, "I don't think the word "autistic" has anywhere near the amount of baggage that 'retarded' has. I can't think of even one time I've heard a person use the word 'autistic' as an insult, or to put another person down. I'm not saying it doesn't happen, but it can even be compared to the word 'retarded.'"
It is for these reasons that autistic people have taken ownership of autistic, using it as the noun form, sometimes even capitalizing it as "Autistic." The goal is to de-medicalize the word, to place it and themselves in a more positive light, to put themselves forth as individuals, as Autistics, who have strengths and weaknesses like everyone else and a right both for their voices and words to be heard...and to choose those words themselves.
14 comments:
As a parent with 2 kids on the spectrum and who uses "autistic" I am grateful for any post that says it is okay to use the word. I have asked one of my kids what they prefer and her response is "autistic." She also thinks the whole conversation is about people not on the spectrum dictating to people who are.
Although I support the identity term "autistic," I have seen it used online as an insult against people who have made insensitive remarks. "WTF? I can't believe you said that, are you autistic? "
Sometimes this follows other people in the community using autism as an excuse for making insensitive remarks. Very often, other members doubt that the rude person really is autistic and point to contradictory evidence. Autistics are generally not amused by trolls making them look bad by association.
I noted that in this comment on the previous post. I do think that people are starting to take the adjectival form and use it as a sort of insult, but that's not because autistics call themselves "autistics." It's because TV shows, news stories, and movies are presenting certain stereotypes that people then try to flip as an insult. But then again, that can be done with many things that aren't considered a disability or arising from a minority status. "Blonde" comes to mind as an example, as in, "I was having a 'blonde' moment."
The most egregious misunderstanding of autism I've seen from the most unexpected place was when Sam Harris described it in essence as the ultimate selfishness, which I blogged about here.
Well, I do see "autistic" used as an insult, but when I see that, it tends to be used politically, associated with stereotypes...
Though I've been told it's a popular insult among teenagers in (I think) Venezuela (used similarly to "retarded").
The main problem I see is most people know autistic comes from autism, and that there are autistic people, but many don't know that "retarded" is a diagnosis, a group of people with disability, nobody calls themselves that, there is only offense.
I call myself Autistic, and spell it capitalized. It is a noun for me, not an adjective, verb, adverb, etc.. For example, I might say, "I, and other Autistics I know, have some similarities and many differences from one another." I do not say, "I am feeling so autistic today," or, "Yeah, guess it is my autisticness coming through."
I have seen it become more prevalent in online postings, and have overheard comments among people in public. On a music industry forum, someone posted how they were being inflexible, and that, "I guess I am just being a bit autistic about this." A reply to the person stated that, "I know what ya mean bro! Same here, lol." I see it used in much the same manner as other slurs, including the "man up!' type comments.
Am I offended? Yes. But, human kind baffles me, so I try to ignore that stuff. On a good day I am able to ignore it, and on a bad day I get irked and say something. On a great day, it would not exist. I can be a bit of a vulgarian at times though, so perhaps I should not complain.
It has been a pleasure to interact with Emily on this topic, which I have admitted I didn't realise was such an issue. I can't help feeling a bit like Emily does about the N-word, in that I still find the noun 'autistics' conjures up the wrong baggage for me (as a non-autistic person) to use in research papers. I agree that autistic people didn't bring this baggage to the term, in the same way that the black community did not bring the baggage surrounding the N-word. Emily still cannot use the N-word, but in doing this she is not 'dictating' to that community what terms are appropriate for self reference, and I would like to stress that researchers and editors are also not attempting to do so. However, I think that when producing text to be read by many, some readers would be uncomfortable about the N-word in a research text, even if that text was written by a black author.
Nevertheless, I *will* feel able to use the term 'autistic person' (which I have been avoiding because I thought it offended autistic people) and indeed will bring all the issues here to the editorial board of the journal I co-edit, which currently promotes person-first language. I will also continue to monitor usage (especially in the UK where I am based) by autistic people themselves. Language is a wonderful but dynamic entity and the meaning and usage of terms changes with time. This discussion has taught me a great deal about the interplay between identity and language.
This parent of 2 "autistics" finds it extremely offensive.
They have names. They are individuals. They have their own issues. They do not deserve to be typecast or part of a "cutsie" group.
The only thing a diagnosis is good for is to get services. It is not who people are. People have names, not diagnosis. Should we start calling them "blindsies", "deafies", "Downsies"?? Why are those who don't need services, but have enough quirks to be diagnosed claiming that autism is "wonderful", "a way of being"... changing the truth... autism is a disability... period. Every time they claim autism isn't a medical condition, that it is a way of being, services get pulled from those that need it most. In Canada the disability tax credit has already been taken away from those with an asperger's diagnosis. What happens if they require services related to their autism or social services and housing??
But then again, in our house we don't live for autism like many, many, many adults and parents do. We recognize it as a medical disability. We live with it, we do not live for it. We chip at it every single day. We have one that will now be an independant adult and will never be allowed to say "I am autistic so therefore I can speak for my brother". He has "issues" that may qualify him for that diagnosis but since he is no longer "disabled" he has no idea what is brother's issues are nor can he speak for him. We have a severe one that is learning every day to speak for himself. He just acquired at 300+ word flipbook and is being taught to use it when his verbal apraxia trips him up. I'm pushing it hard since I don't want those diagnosed as an adult or dx'd as a child but now an independant "adult autistics" speaking for him... EVER. Their message of "not a disability" does much more harm than good.
"Autistics" is deaming... not empowering.
FW2, I think that we're all aware that people have names and are individuals. What requires greater awareness, clearly, is that "autistic" is not a bad word. And it doesn't matter what people think they should call other people. It matters what the people in question think they themselves should be called. So, I suppose if people with Down Syndrome decide that they want to call themselves "Downsies," the rest of the world would get to roll with that.
I think what you've posted here confirms that it's the attitudes about autism as a medical disability that perpetuate the conception of autism as an all-negative tragedy, an affliction, a dark world with no interaction, no understanding. Your children will one day be adult autistics who may speak for themselves. It would be of benefit for you or anyone to understand more about them by listening to others like them who demonstrate the incorrect perceptions non-autistics have about what it means to be autistic. Autistics are trying to tell you. The other part of that dynamic is listening to what autistics say, rather than dismissing their communication (again, as many people have done and continue to do) as irrelevant.
I don't normally take you up on this because you use it so much, everywhere, but that "cutsie" group thing is getting tiresome. No one is arguing that autism is cute. What autistics--and these are autistic people, not just your version of "cutsie" or "Aspie"--are arguing isn't that autism is "cute." They're arguing that they, as autistic people, do have a voice, communication, and individuality--positives and negatives--and that it would behoove people to realize that the word "autistic" doesn't mean "walking tragedy" and to listen to what autistics are saying.
@NikkiB Thanks for engaging in this discussion and considering what we are saying. It takes a village to raise understanding.
Also, @FW2, now that you mention it, the deaf community does refer to itself as "Deaf," with a capital D. Why? Because Deaf people consider themselves a culture and a community. It has its divides, as well, but the community term isn't "people with deafness" or "people who are hearing impaired." There is a cultural pride there.
To farmwifetwo:
It is who I am.
It isn't all I am, but it is absolutely central and intrinsic to who I am.
I hope your kids conceive of themselves as...however or whatever the hell they want to--I'm not into policing as offensive to me what other people choose to call themselves.
But I'm a proud, strong, mostly happy autistic girl. Do me the same courtesy you'd want for them.
I am glad to see autistic people embracing their community. To me, that is what saying they are Aspies or Auties is about. Granted, my autistic child is only five years old, but we have tried to keep an open mind about "treatment" and over time, we've found that there are a lot of people who are DESPERATE to "regain" this child they have "lost". There is a lot of talk about how we should be grieving. My kid is not dead. She's not even dying. She's vibrant and amazing. Why should I grieve? Our lives do NOT revolve around "fixing" or "curing" her autism. We do spend extra time and get services for her to be able to communicate someday with the non-autistic folks, but it isn't to the point of taking over our lives and destroying our family. My daughter is blessed with siblings who love her, a family to whom she is NOT a burden in any way, and kindergarten classmates who watch out for her and engage her in games and learning at school. The sooner we embrace neurodiversity, the better. While it is different than the majority, and thus autistics generally need services to function in a world that isn't built for them, it isn't akin to having leukemia. I don't object to "medicalization" as accepting the reality that autistic people do require more from those around them to reach their best potential and develop effective communication, but I do object to this notion in our culture that autism is just as bad as death, or worse, or that there is some other "normal" child trapped in some horror of a body. It's nuts.
Oh, Claire. Thank you for saying exactly what I wanted to! I wish I had twenty friends like you! I just can't talk to the cure people and I just want to shake them. Spot on comments, sister!
Claire, I like your attitude.
I will never ever pretend that autism or Asperger's are not disabilities, or that they aren't hard, often painful. They are. Sometimes it just sucks.
But...acceptance and working with what *is* is just so much better for the soul.
I'll never work as a person trying to be normal. I work pretty well, all things considered, as an autistic person.
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