Susan's Blog

Thursday, September 20, 2007

What’s In A Name?

Here is something a reader sent me, that we both thought was an interesting point of debate:

“…the last 20 minutes of Oprah the other day when Jenny McCarthy and Holly Robinson Peete were on discussing their children with autism. Holly Robinson Peete made a specific point of saying that saying your child was ‘autistic’ was offensive…they ‘have autism.'”

I feel like although I truly understand Ms. Robinson Peete wanting to have control over how people talk about her child, I disagree. Maybe she herself wants to titrate the label down to perfect accuracy so that people truly understand about her son. I can’t blame her for that.

And yet, I don’t think she is right that the term “autistic” is offensive. I think that kind of slur will occur later, when more people are aware of autism, like what has happened with the term “mental retardation.”

This cultural difference is why saying “autistic” is not offensive. I also believe offense has to do with intent. I don’t believe it actually always matters what you call someone, it’s how you call someone. Or why. If your intent is to single out and put down, or characterize someone by just that one label, then I might be annoyed. Sometimes it matters. It depends on the context and the cultural view of the concept.

I know that in this forum I have made the point that calling someone “A Retard” is offensive, and that is because you are making cognitive disability, a.k.a mental retardation, into an insult by your tone and intent. Mental retardation is not an insult, although I certainly ran away from the concept as Nat was growing up. But that again was not because there is something inherently bad about MR; it was because of how others treat you as just this one thing, and perhaps dismiss or marginalize you. It is offensive if by calling someone that you are limiting their potential, cutting off possibilities.

These days you might hear me say, “Nat tests at a retarded level.” I may have even said, “Nat tests retarded.” This usage is shorthand for discussing Nat’s test scores, which have now become important as we immerse ourselves into the murky swamp of Adult Services with the Department of — yes, that’s right — Mental Retardation. I don’t think you would ever hear me say, “Nat is retarded,” and you would never hear me say that someone is “A Retard,” because that has become pejorative. That word, “retarded,” has come to have a stigmatizing meaning, because of all the people who use it to put down someone else. (As in when “Heyah in Massachusetts we don’t drive in that retahd mode,” was shouted angrily at my brother-in-law once on the Mass Pike.) No, I don’t think people are yet using “autistic” to insult another person. Although I do find myself thinking, “stupid Neurotypicals,” when I see how difficult the world has made something for Nat.

It’s also about your own comfort level with the concepts. Some people are uncomfortable with the Jewish thing, and they cannot bring themselves to say, “Jews.” Instead, they say, “Jewish people,” or the strange, “those of the Jewish Persuasion.” How about “Jewish Blood?” What, does my blood taste more like bagels or something? Does it look blue and white, like the flag of Israel? No, it is the same Christmas red as anyone else’s. So I don’t get it. But if Ms. Robinson Peete has her way, maybe people will be afraid to say anybody is anything. Which reminds me of an interesting example. I know an autistic young man who can’t bear for anyone to say to him, “You’re not…” One inaccurate designation will ruin S’s entire day.

What’s next? Soon people will start to say, “Those who have Judaism,” rather than “Those who are Jewish.” Dayenu.


I’m with you on this one. I don’t really care if someone calls my Jack autistic or says he has autism. It’s just a way to describe the disorder that affects him .. pure and simple.

Ironically, it’s not about specific words, (of which he has very few.) It’s about intent as you so much more eloquently stated. 🙂

I’m enjoying your blog and also reading Making Peace. We just moved to Dover from Dallas, Texas … major culture shock but we are loving it.

You are an inspiration to me. (Jack is just 4…) I plan on lurking around the Brookline Booksmith so I can actually experience an SS sighting!


— added by Judith Ursitti on Thursday, September 20, 2007 at 3:42 pm

Dover is nice. Welcome to Massachusetts, Judith!
I’ll be at Booksmith next Thursday the 27 at 7 to see John Elder Robison read from his new book, “Look Me In the Eye.” Introduce yourself if you go.

— added by Susan Senator on Thursday, September 20, 2007 at 4:24 pm

When I was growing up, my mother told me to say someone is “of the Jewish faith” instead of saying he/she is a Jew. Wasn’t until chatting with my Jewish room-mate (at Penn) that I learned that saying someone Jewish is a Jew is not a problem. Oh well — my Mom meant well.


— added by Anonymous on Thursday, September 20, 2007 at 4:35 pm

Crap … I would love to be there next Thursday but I’ve got not one, but two conflicts.

My beautiful niece Erin is going though. (She’s 23, taking a semester off from University of Texas to help us with the move, transition Jack, etc.) I’ll definitely instruct her to stalk you. 🙂


— added by Judith Ursitti on Thursday, September 20, 2007 at 4:41 pm

There’s so much about Oprah’s show and what Ms. McCarthy and Robinson Peete had to say, I don’t even know where to begin.

At any rate, the autistic adults I communicate with prefer to be called “autistic.” Not persons with autism or whatever other pc b.s. is the latest fad to hit Oprah or Dr. Phil or whatever other mainstream media talking head is out there proselytizing about this week.

— added by ASDmomNC on Thursday, September 20, 2007 at 5:32 pm

It’s true. I feel like a took a mere bite of gristle off of a very large piece of meat — a lousy cut, too. That Oprah show certainly has much, much more to discuss than just the one comment, but it’s a good place to start.

— added by Susan Senator on Thursday, September 20, 2007 at 5:35 pm

It is one thing to decide which terms are acceptable to yourself. What she said is “it is like nails on a chalkboard to the autism community”. To that I say, but what about the Autistic community?

— added by Suzanne on Thursday, September 20, 2007 at 5:39 pm

Autistic people, by and large, prefer ‘autistic’. I think Joel explained it well. If it’s a minor thing, then why not use the one we prefer?

— added by Joseph on Thursday, September 20, 2007 at 6:09 pm

I think most people’s comfort level is driven by a heart-felt desire not to offend. People really don’t want to be hurtful with words. Politically correct began as an earnest attempt to correctly label. I used to be a girl until women got politically active, hell, I was a “career girl” in my twenties in the dark ages of the 1970s. Things have changed so much for the better. Thanks for your thoughts and observations, we all want to be sensitive with our words and not offend. Honest!

— added by Anonymous on Thursday, September 20, 2007 at 6:32 pm

This is a tough one. I recently noticed on my ASA newsletter that a new member could sign on as a Parent, a Teacher, a Friend, etc….or, “Other.” I asked why an autistic person would have to identify as an “other” and was told that the board thought this was in the interest of autistic people, who would want to be seen as people, first, and not necessarily people with autism. I asked whether autistic people themselves had voiced this preference (fine with me if so) or if this was a decision made by non-autistic people. I did not get a response. I think they don’t even know what I’m talking about, frankly.

— added by Bink on Thursday, September 20, 2007 at 7:06 pm

I will always remember reading Valerie Paradiz’s book “Elijah’s Cup,” right at the beginning of groping toward a diagnosis for my daughter, in which she notes that she very deliberately uses the term “autistic” rather than “has autism.” The distinction being that the latter implies a malady (something you “have”) rather than just describing some character traits (who you are). That point has always stayed with me. As others have pointed out, autistic people refer to themselves that way. So it’s ironic that Holly Robinson Peete thought it was disrespectful to say “autistic.”

— added by Anonymous on Thursday, September 20, 2007 at 9:37 pm

I am completely with you on this one Susan. I was offended by them saying that “autistic” is offensive. Great post.

— added by Laura Cottington on Thursday, September 20, 2007 at 10:33 pm

This week I embarked upon my graduate “autism specialist” program. Our first seminar was on APA writing, and the mandatory usage of “people first” language. Ugh. My son is autistic. Yet I am not allowed to “say” that. the lecturer did concede that people have a right to be called what they wish, and therefore their personal self-label supercedes (sp?) APA regulations. However, we must then DOCUMENT this in our writing..e.g. “Jakob, who likes to be referred to as autistic rather than ‘having autism’…”

The thing that really highlighted the ridiculousness of this stance was the further example given. Don’t say ” lesbian woman”; say a woman of lesbian orientation. Or, don’t say African-American person; say a person of African-American heritage.

When is somebody going to admit that the emperor of political correctness and people first language has no clothes?

Who isn’t going to fight this battle in my papers, but will continue to describe my son as autistic (for which I have already been figuratively slapped)

— added by Susan on Friday, September 21, 2007 at 12:16 am

Is Holly Robinson Peete black, or a person of African American descent?

— added by Anne on Friday, September 21, 2007 at 12:38 am

I’ve heard this argued before. I thought part of the difference was that “child/adult with autism” seems to leave room for other descriptors, while “autistic” sounds to be the complete description of the person. ?

On another note, a rabbi I had in college at Bryn Mawr told us that Judaism is not a “faith”…

Cathy in CT

— added by Anonymous on Friday, September 21, 2007 at 7:27 am

Hi It’s Holly Robinson Peete..really!
As you can imagine I have recieved thousands of emails regarding my appearance on Oprah.
SO happy to see folks dicussing the “child-first” language I introduced to many people on the Oprah Show on Tuesday. I will be on Larry King Live pushing forward that same agenda. I want to clarify that I am NOT trying to be politically correct. I see what “labling” does to MY boy in school and find that when I educated his classmates and their parents that he HAS a disorder, not that he IS a disorder it is amazing how differently they treat him. To equate it to religion or race is just so irrelevant and I don’t even have time for that discourse. And FYI I don’t give a damn what you you call me ( ANNE wrote:Is Holly Robinson Peete black, or a person of African American descent?) but anything we can do to not to further segregate these children is only positive. But this is MY agenda and anyone who is not fine with it do your thing. My son typed recently “I am not autism” (I think he meant “autistic”) because he was sick on people calling him “autistic”. Words are powerful to these kids. So it’s really not about what we parents think. Especially when it comes to a disorder so few understand. Thanks for bringing it up!!!
Watch Larry King Live on 9/26!

— added by Anonymous on Friday, September 21, 2007 at 7:56 am

Holly –
Thanks for weighing in. I do wish that you would explain why you feel that equating this to religion or race is irrelevant. I am really interested in this discussion and why you see it that way.

— added by Susan Senator on Friday, September 21, 2007 at 10:08 am

Blind, deaf, mute(dumb probably not a good example), hypoglycemic, diabetic, epileptic, autistic. I don’t consider any of these terms pejorative, nor would I want my son to feel any shame over this adjective.

I’m sorry, but we have bigger fish to fry.

— added by Lisa on Friday, September 21, 2007 at 11:15 am

I agree…much, much bigger fish.

We’re wasting our time on semantics. Let’s focus our energy on providing treatment, resources for individuals of ALL ages and valid scientific research for those dealing with autism.

The dismal amount of research being done related to autism is the true sound of nails on a chalkboard for this crazy mom. I think the NIH allocates more to nail fungus…


— added by Judith Ursitti on Friday, September 21, 2007 at 1:37 pm

You know, I don’t think my son would know the difference between being called autistic and saying he had autism, unless someone made a point to say being autistic was a slur. I have never felt this way and fear for that message being put out there.

I remember watching Maria Shriver one time promoting her latest book (ironically enough, it may very well been on Oprah as well). She used the word “retarded” without hesitation (as in a character in her book was retarded). I was taken aback for a minute, and then I thought, you know what – she’s the last person that would say something offensive. A little food for thought.

Thanks again for the post, Susan!

— added by Sally on Friday, September 21, 2007 at 1:45 pm

A quick side note…I just received the latest People magazine in the mail, and the main story this week is an excerpt from Jenny McCarthy’s book. She’s on the cover with her son, and in bold letters under her name it says, “Fighting for My Autistic Son.”


— added by Sally on Friday, September 21, 2007 at 3:17 pm

I think “person-with” makes better rational linguistic sense when the “with” is a temporary (or preferably temporary) condition, as in “person with broken leg” or “person with cancer”. Person-first language makes all kinds of sense when trying to avoid the bad hospital habit of saying “the emphysema in 402?. The ENT says I am a person with hyperacussis and tinnitus.

Actually, I would end up saying things like, “I am nearsighted and have Auditory Processing Disorder”, and skip the whole person-with scenario. “I am brunette” is infinitely handier than saying “I have (or am a person with) brunette hair”. It’s understood that it’s my hair color we’re talking about, and that a description of me is only slightly delineated by that descriptor – I’m more than my hair.

When the condition is rather a state of being — something fairly permanent, whether acquired or developmental — then it’s (noun) as in autistic, Deaf, gay, male, dyslexic, Canadian et cetera.

— added by andrea on Friday, September 21, 2007 at 7:27 pm

At what point in time did we have to start being so damned careful what we say? When I was a kid, you could refer to someone as “a black person” or “a blind person” or “an autistic person”, and everyone would know you were simply describing someone, not insulting them. Now we have “people of African-American descent”, “visually impaired people” and “people with autism”. Language is not inherently offensive. We make it that way by making such a big fuss over it. The guy who lives across the road from me is black. That is not an insult, it is a simple fact. If you stop to think about it, there is absolutely nothing wrong with the word “black”. It’s just an adjective. It is made into a “bad word” by people who blow it all out of proportion.

My son is autistic. People who claim that that is an offensive word are themselves being offensive, because they are implying that being autistic is a Bad Thing that needs to be cloaked in fancy language.

— added by Kirsten on Saturday, September 22, 2007 at 11:30 am

I used to feel awkward using the word “Jew” too. I was never sure if it was right. Until I married my wife and now I’m pretty comfortable with all things Jew.

— added by Shannon Brooke Davis on Saturday, September 22, 2007 at 4:19 pm

I’m a Jew. I don’t feel offended. How are you using it? If you put “filthy” in front of it, then it is offensive.

Jim Sinclair wrote a piece called “Why I dislike person-first language.” We don’t call a person with Blackness or a person with Jewishness. We say Black peron (or African American Person).

This comes up a lot in my lecture because my feeling is I ought to use the language that autistic people say they WANT used. They want it used becuase there is NOTHING TO BE ASHAMED OF.

I think that the reason people are uncomfortable is not for autistic people, but for themselves. Maybe, if you think disability and autism are horrible things, you want to avoid saying that someone is autistic.

So we need to think a little more. It’s ourselves that we’re uncomfortable with!

— added by Estee Klar-Wolfond on Sunday, September 23, 2007 at 6:49 am

I found it interesting that HRP was insistent that her child was not autistic but rather “a child with autism” yet she also said he is not “retarded”. To me, just semantics. My child is autistic or is a child with autism.

— added by Anonymous on Monday, September 24, 2007 at 7:30 am

I find “autistic” preferable to “child with autism” only because the latter seems to further the mindset that autism is a temporary condition, something that could be removed while leaving a “normal” child intact. Certainly different problems associated with autism can be ameliorated; however, I don’t think people “stop” being autistic.

— added by Laura on Monday, September 24, 2007 at 11:07 am

I’m expanding on Laura’s comments. Maybe parents who say “my child has autism” think/want/hope (subconsciously or consciously) someday there will be a cure for autism, and as Laura said, the autism is temporary and that the autism can be removed from the child, and that the child will be normal now. And the parents who say “my child is autistic” think (subconsciously or consciously) that the autism is a part of who they are (eg, physiological makeup (gray matter, white matter) of the brain, etc.) and that the child and the autism can’t be separated. I have no problem saying “my son is autistic”, and will continue to do so.

— added by MarkZ on Tuesday, September 25, 2007 at 10:31 am

MarkZ, I totally agree with you. The “child with autism” smacks of a curebie-type mindset. Maybe that’s the difference.

— added by ASDmomNC on Tuesday, September 25, 2007 at 3:54 pm

Yes, that’s what I think to–although I didn’t want to say so directly!

— added by Laura on Wednesday, September 26, 2007 at 3:20 pm

Truthfully, we lost a friend over this very issue. He sent an email joke using a retarded innuendo. We responded that it was offensive. He never spoke to us again.

I am reminded of a recent Chris Rock joke for his opening on Saturday Night Live. When asked how he felt about an Afro American (Obama) or a woman (Hilary) in the White House, he responded that we already have a minority…a retard. I felt red starting from my toes. It made me sick. Nevertheless, he said it on NBC, which was run by Bob Wright, a grandfather of a boy with autism.
Was I being sensitive? I did not think so…to me this wasn’t a joke about Bush, it was using mentally challenged indivduals for a laugh.

— added by Robin H. Morris on Thursday, September 27, 2007 at 8:13 pm

from that blog ;

[The problem is not with the term or diagnosis of “retardation.” The problem is that some people are viewed as less-than by others. I think it is up to me as Nat’s advocate to set them straight. You misuse the term “retarded,” treat it like it is a bad thing, and you will hear from me. Growl.]

………… and I wholeheartedly agree !!!!!!!

The problem is not with the term or diagnosis of “autistic.” The problem is that some people are viewed as less-than by others.

To Holly if u check in again – keep the fight alive – there ARE thousands of us parents even outside the USA that appreciate every effort you and Jenny have made speaking out for our kids !

— added by penthius on Tuesday, October 9, 2007 at 10:03 am

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