With Autism or Autistic?
October 12, 2007 by Kristina Chew, PhD
Filed under Health
Which do you say?
Because “autistic” is an adjective, some prefer not to use the word. That is, to say that one has an “autistic son” means that autism is an intrinsic part of that child. Some who think that their child “became” autistic due to something like a vaccine or something in vaccines suggest that autism is something separate and distinct. Therefore, using a phrase such as “with autism” is thought (as the grandmother of an autistic/with autism young man writes in a letter in the October 12th Modesto Bee) to be the preferable term, rather than “autistic,” which the newspaper used in an October 7th story. From autism grandmother Martha Loeffler’s letter:
The article frequently referred to “autistic boys,” “autistic high schoolers,” “the autistic spectrum,” etc. The accepted phrase is “with autism.” It is used by parents, professionals and others who work with those who have any form of the syndrome. My grandson, Zev, is a young man with autism. Though the difference in terminology might not appear to be of much significance, it is important to those who are involved and I believe their wishes should be respected, particularly in the media.
Conversely, “autistic” has come to be the preferable term if one sees autism as simply part of who one’s child, who a person is. And then there is the noun autist which, while not a term that I use, has the advantage of being one word.
One can say that this is just so much quibbling about semantics, but “with autism/autistic” is a topic that people seem to be giving some thought to (consider the responses on this Autism Speaks message board about using “autism” or “autistic”). I use both, as the words suit the sentence, and I also tend to use “autism” itself as a sort of adjective (in “autism mother,” “autism dad,” “autism family”) to suggest that one has a particular experience with an autistic person, while not necessarily having autism oneself. Maybe one reason I have worried less and less about how I refer to Charlie’s being disabled is because the best way of saying who he is simply to see him himself. Autistic, with autism, almost 10 and a half.
Good round up. I thought my compass had swiveled!
It’s ironic to me that while my little guy struggles so to speak even one world, we quibble over semantics…
Geez …
Meant to say one
w-o-r-d …
We use the terms interchangeably- sometimes we talk about Joey is autistic. sometimes Joey has autism. When we start to quibble about such labels, the words take on more power- usually negative power- than they ought to. Every once in a while somebody get irate over it, but usually they are new parents who are still in the process of accepting their child and the turn life has taken for them.
Let’s do this. Find me 2 autistic people who argue that you should say “with autism” and I’ll reconsider.
I’m autistic.
BTW, if you look at my blog, you’ll see both kinds of language–I just use whatever sounds the best in the sentence.
Joeysmom has a good point about not giving language so much power.
Language has power; this cannot be taken away, so it must be aknowledged. Why would any group of people not have the right to decide what they want to be called? Yes, you get to speak for your child until he or she expresses a preference. But if he hasn’t expressed it or she hasn’t found a way to communicate it or he just doesn’t give a rat’s ass yet due to the more important preoccupations of youth, why reject the language of a culture which would accept him without reservation in favor of a larger culture which sees him as diseased, damaged or incomplete?
I don’t get too bent out of shape when someone calls me a “person with”. I just let them know that every adult autistic I’ve spoken with prefers “autistic”.
Unless the lumping-in is for a practical cause, I haven’t liked it. I would be seriously annoyed, for instance, if someone referred to me as “an Aspie”, not least because of the sentimentality and reduction in it. You expect a line of Hummel figurines: “The Little Professor.” But while my asthma was incapacitating I called myself “an asthmatic” when I wrote about or attended smoke/scent-banning forums. There I wanted to identify myself as a representative of some group whose interests were being overlooked. It didn’t hurt that the word had some shock value from sounding old-fashioned.
But would I have thought of myself — identitywise — as an asthmatic? No, I don’t think so. Sure, it circumscribed and controlled my life completely. The first concern in going anywhere new, or making any change at home, was “Will I be able to breathe?” Everything was scheduled around shots, medications, and doctor visits. I left jobs because the buildings had poor air quality. Even so, there was considerably more to me.
I’d be willing to say the Asperger’s has more to do with me. It’s a tautology, though, so I’m not sure it’s anything to get excited about. You can apply the label because of traits I have. Traits, habits, peculiarities that define me. If I were not like me, this label would not fit. Since “amy” is finer-grained, as a label, than “Aspergers person” is, I prefer “amy”.
I don’t really like flag-waving for the hell of it, or from some emotional need to be recognized as part of a large group. Unless, as above, there’s a practical reason for it.
answer to bev (”why reject the language of a culture which would accept him without reservation in favor of a larger culture which sees him as diseased, damaged or incomplete?”):
Because a) large flagwaving groups of people tend not to be terribly bright or sensitive, regardless of what flag they’re waving, perhaps because the first preoccupation is with maintaining identification with the group — so why would you be so anxious for acceptance from this “culture”?; and b) you might not care all that much what the larger culture thinks of you, regardless of your age, or take it seriously when it says there’s something wrong with you. I mean considering the source.
Upon actually reading the grandmother’s letter, I see that she also refers to autism as an “insidious condition”. I see.
This is a sidebar for me, but it is tricky because there are those who would define “autistic” negatively.
I don’t know to what intent those who are currently or often using “with autism” for, although recent connotations seem to be that there is x over here and the autism to be stamped out over there, but the original intention of People First language was towards inclusion and acceptance, not the opposite, to see the person in all the facets vs. being seen as the sum total of a “disability”.
http://www.disabilityisnatural.com/peoplefirstlanguage.htm
Personally I see my girl as…Eleanor. She is a beautiful person. Whichever term she would like to use is okay by me.
Bev
Can you tell me who decides what the group of non communicative autistic persons/persons with autism want to be called?
My son has Autism Disorder not Aspergers or HFA. He faces REAL challenges in life. The autistic person vs person with autism debate is not one of them.
As for WHAT autism is that is beyond dispute. It is a neurological disorder; not a trendy internet club.
Not a person with Asperger’s or what some call “high functioning autism” does not face challenges in life too (at least among those I have known).
In this week’s People magazine there were a few letters in response to the Jenny McCarthy story. One letter was from someone informing the magazine that they should write “with autism” instead of “autistic.” But then in the middle of the magazine there is a small piece about the model-search reality show contestant (I am rooting for her!) which refers to her in the header as autistic. I thought that was interesting and wondered if it was deliberate on the part of the editors.
I use both terms, generally. Some friends have mentioned to me that they personally find the term “autistic” offensive, so I don’t use it around them, as a matter of respect for their feelings. It doesn’t bother me to refer to my child that way, though, as I do believe that her autism is an intrinsic part of her and nothing to be ashamed of. I don’t call her, as Temple Grandin says, “a person with femaleness,” either.
Suppose you are a white person. You adopt an infant of another race. It will be many months before he can speak, much longer before he understands the politics of prejudice. When referring to the race he belongs to, will you use the term adults of the same race have told you they are comfortable with? Or something else? Maybe something they have told you is offensive? Just because you can?
bev, is that question to me? I do try hard to seek out and respect the views of adults who will experience the world in the same way as my child. I keep feeling my way along and learning all the time. It is a challenge for me, one at which I am sure I fail miserably sometimes. (I’m sure in about 10-20 years my child will let me know PRECISELY in what ways I screwed up.)
I meant adults who DO experience the world in the same way my child WILL. sorry
I refer to my son as autistic because that’s what HE wants. And I feel what he wants in regards to terminology is more important than what organizations or parents or professionals do. He’s the one who lives with autism every single day of his life. I live with it second hand and therefore have no right to say which language is appropriate.
I used to use the Person First Language mainly because I had the impression that was the right and more accepted way to address autism. It wasn’t until I was privy to a very heated discussion between autistics and non-autistics regarding the proper terminology that my perspective was changed. It really opened my eyes when I read comments from autistics saying they were offended by the Person First Language and that non-autistics had no right to speak for them or decide how their disability should be addressed since they aren’t the ones who actually live with it every single breathing moment of their lives. Several stated that autism is indeed an intrinsic part of who they are and that can’t be changed or taken away from them.
It was after this that I asked my son if he was autistic or had autism. His words were, “Mom, I’m autistic and nothing’s going to change that.”
I’ve since stopped using the Person First Language. I don’t get upset when I hear other people use it, but the few times I’ve had someone “correct” me I stated it’s what my son what’s and he has more right than anybody else to decide how his disability should be addressed.
No, Bink, not at all. It was in response to Mr. Doherty’s question which he addressed to me. I apologize for not having been clear about that.
I tend to use both “has autism” and “autistic” for Bobby – kinda depends on whether I have the energy left that day to use two words in place of one! I think that to us, Bobby has autism, which makes him autistic – noun and adjective. He also has blond hair, which makes him a blond. Both aspects are part of the cute and bouncy person that is “Bobby”, and always will be part of him to some degree, so I guess we don’t make too fine a point about it. Although, if we’ve had a particularly trying day due to tantrums, OCD, etc. or where I’ve had the stuffing beaten out of me, I *will* call that “an autistic day” when I call my mother to whine and get some sympathy
It’s a convenient shorthand among the family…
The irony Harold doesn’t call this a real challenge is that “autistics” aren’t the ones that make it a dispute. While I’ve seen essays, blogs and comments by autistics explaining why they don’t like person first language, I’ve never seen them correct someone else for it. It’s always the person first-user that corrects.
It’s always done in this PC condescension too. Assuming we are just talking without any experience or background, they always include “it may not seem important to you”. Well, yes it’s important. It’s important enough to choose over the other phrase.
I don’t just use the term autistic to label the whole person, I also use it to describe traits.
Oh sorry bev, I see it now. Did not mean to be so self-centered.
I once participated in an online forum where the threads were supposed to be very specific and keep on topic. A few times I started threads asking if any participants had had certain experiences as children, and what they now thought about those experiences as adults. These were things I was considering doing with my child but I wanted to first get the point of view of adults who had had time to reflect on the experiences. I kept getting answered by parents who were currently doing the things with the kids, though, and who would swear the kids loved it or were fine or were unscarred at least. Then I would write a post saying, thanks, but what I am actually asking is for people who went through this THEMSELVES as children to tell me how they feel NOW. Then I’d get more responses from parents saying their kids were fine with it. (Oh, and finally ONE response from someone saying she acted like she loved it as a kid but actually it was horrible and she wished it had never happened.) It was as if most posters could not even understand what I was asking. Sometimes the kind of thing being discussed here reminds me of that.
We use them both she has autism which makes her autistic. I am from america which makes me american. I find it ironic that my child spends so much time trying to learn how to communicate what she means with words and the parents of children like her spend just as much time arguing over how to communicate that their children have this communication problem.
If a person has an illness such as pneumonia we don’t say ‘he is pneumonia’ we say ‘he has pneumonia’. I see Autism as an illness so therefore would say ‘he has autism’. I think if you say ‘he is autistic’ you are defining him as a disease not a person. The person has autistic traits because he has autism but he is a person first last and only. I have a grandson who has autism and I hate to hear people say ‘oh he is autistic’.
I’m still not sure whether I R 1 2, or not. At any rate, I’m pretty close.
I have been advised that a formal diagnosis at my late age would be expensive, dang near impossible (my parents being dead), wouldn’t get me any services in FL anyway, and might stigmatize me in some ways.
Nonetheless, I will own my weirdness; I am not a person with weirdness, but a weird person.
I think Harold is a person with trollness.
Bink,
Yes. Exactly.
I’ll admit I fall under “autistic”. Now, I understand why people discard that as simply language, and that “autistic” and “person with autism” are just semantics, but they imply the issue of internalization so strongly that it still is a legitimate question.
I do not think autism is a disease, but an important and worthy aspect of who I am, and therefore will argue for internalization. Now, I still say go to the person, but I do think that the far majority of autistics themselves do say they are autistic, and they identify with it as a human being, though I am open to those who think otherwise. I don’t think, though, that can ever be decided by the parent, because the parents, truth be told, may not know of the child in that regard, just because the child can’t communicate that information.
And, Harold, I will respectfully disagree with you in regards to this being a real issue. This is a real issue, because there are understandings, and actions, that will happen because of the internalization versus externalization. It factors into perceptions of creating your child as something to be fixed or something to help. A broken or whole person. A real human being or the shadow of one. Trust me, it took some work to convince my family I had always been a whole person, thanks.
In regards to the non-communitative part, I do think that many of us have been through the non-communitative part, and feel no differently for it. My thinking pre-ABA rings in memory as an autistic in thought, not just in communication, and not disjointed (though simplistic as probable for the age).
Cliff
A further argument against “autistic” or “aspie”:
Unless you are unable to live independently, I think the internalized label is likely to get in the way. I mean that regardless of the difficulties, you will have to get up, go to work, keep jobs, keep house, buy groceries, pay bills, etc. In the end, it doesn’t really matter why these things are hard (or whether they’re harder for you than they are for other people). If you can find strategies from autism therapies that help, marvelous. If you can find strategies from other therapies that help, marvelous. But the label itself is not, I think, going to help you get through the day. I think it’s more likely to be a shovel to lean on. “This is hard for me because I’m autistic.” Well, all right. But I don’t think it adds value to, “This is hard for me.” In the end you’ll have to find your own ways of getting through the day and making sure you do what has to be done.
The idea of “fixing your child” just makes me angry. If the child seems strange and is not physically ill, and this is not a signal to you to slow down and try to listen carefully to your child on your child’s terms, then it seems to me the problem lies with you, not with the kid.
This terror of the particular, this desperation to classify, I really don’t get it. I”m reminded of the title of an art book I like: _Seeing Is Forgetting the Name of the Thing One Sees_. (A Life of Contemporary Artist Robert Irwin.) He understood.
I have a son with athleticism. I mean, I have an athletic son. No, wait…. I have a son. (Two actually, but that’s not the point here.)
I have an artistic child.
oo, it’s a tur’ble thin distinction.
When referring to my son I still use both…until he’s able to instruct me otherwise of course.
Since hearing autistics say they prefer that term to be used that is the term I now use as my default in reference to an autistic person.
I do think it is important to recognize things about people. I mean, the label as a strict definition is going to cause some issues. But it clears up more points of confusion.
Because, in the end, people can’t see internally. They can’t see the person in front of them who they are, but they assume things about people that are generally true which is going to cause issue when that isn’t so. Now, in the case of most, the differences are not as significant or not as relevant. But a label is rightfully created as an easier way for people to understand something that, at a minimum, would otherwise take time and time to explain. It’s difficult enough to explain the rather unknown subtleties of autism while using the label, and practically impossible without.
I recognize the inherent danger of a label as a crutch, but I think the benefits outweigh the drawbacks by miles. Let’s be honest about this; some people can’t reasonably do some things. This is universal, not limited to disability groups. And it’s helpful to have even a vague understanding or knowledge of a person in that regard.
And, amy, you are right in the regard that the label will not help ultimately. But the understanding, however flawed and limited, gained by the other person will. That’s why labels, actually, all words, exist, and all with the same issue.
Although, now thinking of it, what difference does it make whether “autistic” or “with autism” is used in terms of having a crutch? In fact, it’s much easier to skate by with having a disease…
Cliff
How many times does it have to be said, “high functioning autism” is “autistic disorder” and there is no such thing as “autism disorder”.