Monday, March 29, 2010

Do you find the word autistic offensive?

I asked a friend of mine who is a superb writer, an extraordinary disability advocate, a wonderful mother and does much else
besides, to comment on this blog.

She pointed out that many people find the word "autistic" extremely offensive. In People-First language you never
describe someone as autistic, but as having a diagnosis of autism.

Obviously, that's a problem for this blog since the word is in the address. I've also used it several other times.

Let me clarify that by autistic, I mean someone with a diagnosis of autism. That's all. It doesn't define my son, or any other child with that diagnosis.

When I first heard the word applied to my son, it was devastating. For at least a year I wouldn't allow anyone to use it.
I did not want my son's pediatrician to see the diagnosis. I did not want him labelled.
Of course, I couldn't bear the words "diagnosis of autism" either.

At the time all I knew of autism were stereotypes and generalizations. And some of the
physicians and specialists I encountered did little to help with that.
They too, have their stereotypes and generalizations that they foist
on the overwhelmed parents of the newly diagnosed.

I want to respect the wishes of my readers.
So I need to know what those wishes are.
Here's a quote from Wikipedia suggesting how tricky this question is:

"Person-first terminology is rejected by some people with disabilities,
most commonly the deaf and autistic communities.
The National Federation of the Blind has also officially rejected
person-first terminology. People who reject person-first terminology
generally see their condition as an important part of their identity,
and so prefer to be described as "deaf people" and "blind people"
and "autistics" or "autistic people" rather than "people with
deafness" and "people with blindness" and "people with autism".
In a reversal of the rationale for person-first terminology,
these people see person-first terminology as devaluing
an important part of their identity and falsely suggesting
that there is, somewhere in them, a person distinct from their

Notably, these two conditions have extensive effects on language use,
leading to significant subcultures, the deaf community and the autistic community.
These features are not shared with most other conditions that are commonly
considered disabilities. Some people with these conditions do not
consider them disabilities, but rather traits." -Wikipedia, March 29, 2010

So what to do?

Tell me what you think-I really want your comments.

Okay, I won't close without a book recommendation in case you're a regular reader (do I have any of those?).

Super Silly Sayings that are Over Your Head/Snodgrass
tries to help kids with an autism diagnosis and other literal thinkers
understand what odd expressions like "over your head" and "ants in your pants" really mean.
It's amply illustrated with both the literal and figurative meanings.

My boy liked the book well enough, but I have never heard him use a colloquial expression,
even though his speech therapist works on that skill specifically.
Yesterday she asked what he might say if she told him
"It's snowing outside."
"I'm pulling my leg." he replied

So am I in a sticky situation? Have I opened a can of worms? Walked into a hornet's nest?
Please tell me.*

*thanks to my two commenters! Click "comments" to read their great remarks


  1. Hey! I'm the person she writes about, above. (She clued me in that she wrote this.) Early on in our journey, my daughter's father pointed out that the word "autistic" came across as a disease (which some camps believe it is) or as if that was what defined her. Not being someone enmeshed in the disAbility community, as I, I thought his request to refer to her as having autism to be pretty astute. I'd later learn about PeopleFirst language.

    I do see the point of the Deaf and the largely adult autism community who prefer "autistic." If my daughter were to grow up and refer to herself as "autistic" bc that was her preference, I'd also respect that. But, as her mother, as her agent in a world that sees the disAbility first, who sees autism as a disease or a deficit, and also being someone who's spent decades in public relations, I opt for the power of language--she is a person first, has a disAbility second.

    I often illustrate it this way. To me, this is powerful. What if I said to you: there's a "Down syndrome boy" in my child's class? (I hear this often. I hear LABEL! Stereotype! Fear! Oddity! Difference!) OR, what if I say: "There's a boy who has Down syndrome in my child's class." To me that's much more humane. I hear there's a child that has differences, not a LABEL, stigma, stereotype.

    Some people think this is a bunch of mumbo-jumbo. As a writer for 30 years, I believe in the power of language to shape perception. To me, FirstPerson language is also spoken advocacy, a subtle reminder of the humanity versus the label.

    The best empowerment tool I've found is a free advocacy training program available in almost all states: Partners in Policymaking Leadership Institute. Here, in Tennessee it's sponsored by the Tennessee Council on Developmental Disabilities and registration is in April. That is where I learned about PeopleFirst, the history of the disAbility movement, and issues regarding advocacy how-to, etc. It is truly life-changing. Also, Kathy Snow, of Colorado is a foremost advocate on PeopleFirst language.

  2. a complex topic, trying to figure out how to think/talk descriptively & respectfully about people with diabilities. i had imagined i had it all figured out, word nerd that i am, years back when my son was very young: child with special needs. the vocabulary which accompanied the development of family-centered care in health care circles employed a similar term: children with special health care needs. the phrase seemed people-first oriented, describing a characteristic rather than state of being, even tho' it didn't make for a pronouncable acronym.

    then came a conversation with diane coleman (oddly, i know 2 diane colemans--this is 1 with the disability rights organization, ADAPT, esp. the "not dead yet" initiative). she gently yet forcefully corrected me--saying that she didn't view her needs as any more "special" than mine. she also rejected people first language, believing that her state of being "disabled" was inextricable from her self-identity.

    so i readily dropped the "special" or as dara says/spells, "spaaayshul," even more so as i've come to learn that it is usually a synonym for "segregated."

    however, i haven't aligned myself against people-first usuage, in large part because of the horrid history of nouns related to intellectual disability, all the way from idiot & imbecile (which still, by the way, appear in TN code) to mongoloid & retard (which still, by the way, appears all over facebook...)whether used as "medical diagnosis, label or flat-out insult. it also strikes me that unlike with other liberation movements--such as gay rights, ADAPT as mentioned above, feminism--i haven't heard trying to "reclaim" the term "retard" & use it as a point of pride as has been done with "queer" & "b*tch" & even "crip".

    when i'm trying for a laugh as i introduce myself, i'll string a long list of terms together, which could all be used as nouns, but which i prefer as adjectives: feminist, vegetarian, pacifist. "poet" ends up being the terminal noun, since i haven't figured out a way to adjectivize it yet. each is an essential component of who i am, but none is definitive on its own.

    deafness & autism are the outliers, as christine points out in the wikipedia reference--noteworthy for several reasons, perhaps particularly since both conditions have a major impact on traditional verbal communication. have always find it fascinating that the american sign language sign for "hearing", i.e. someone who is not deaf, is the same as the sign for "speaking"...

    so, a tho't-provoking discussion. i think i've signed up to follow this blog but am not sure i've done so in a functional fashion. & as a reading-related aside--just started jodi picoult's newest, "house rules" which features a teenager with asperger syndrome.
    till later--holly lu