Susan's Blog

Saturday, January 7, 2012

Autistic or Person With Autism?

When Nat was just three, we took him to Mass General Hospital to get a diagnosis. Back then I existed among layers of reality; on the surface, the part everyone saw, was where Nat had no diagnosis. When dwelling there, I saw Nat in a blur. That’s because I wasn’t really looking at him. Because of the other layers. Below pretty outward face came the scared one, afraid of everything, imagining terrible things about germs, to fight the fear that this boy I loved was not the boy I loved.

The innermost level of me was the hard nugget that knew. I even knew what it was called, even though the one movie I’d seen about it showed me nothing like my Nat. I knew what it was called, but until that doctor said it out loud, I didn’t have to pay attention. That hard nugget just sat there in my chest, hurting now and then but ignored.

So the doctor then said, “It is called PDD, Pervasive Developmental Delay, and it is under the Autism Umbrella.” So then I knew it was autism, and that I had been right. But what did I really know?

This memory came to me today as I was thinking about the debate about the word Retard, and also Person First Language. I have helped my friend Tim Shriver and Special Olympics campaign against the “R-word,” to let people know that it is just as hurtful as any racial slur. I’ve written a few opeds and blog posts on the topic, always coming down on the side of, “words can hurt.”

But yesterday I saw this post on ThAutcast, and it made me wonder about how deeply words go. Does positive intent nullify the sting of a word, as long as positive intent is clear? I don’t know. I think about how someone once said something to me that was ignorant, about Jews, and she is a good friend, but it still hurt me. She wasn’t even using any bad words; she was just expressing in a neutral way a hurtful stereotype. She did not mean harm, but it did some harm. It made me think she was a little bit stupid in a way that I hadn’t known. It made me like her a little bit less.

Other friends of mine have slipped, using the word “retarded,” and I have gently reprimanded them. So awkward, awful for that moment. I try to move on, but then there is that thing in my chest, that nugget, and I can’t forget. There is a tiny slice of my brain that offers itself up like evil pie, every time I see those friends. That little piece that asks, “How could you have said that? In my presence?”

Sartre used to say that when you posit that something is that something, it immediately rises up out of its no-thingness, its unconscious being, and becomes the something. And then it is no longer the thing. It is no longer nothing. Or something like that. So then the moment the doctor said that Nat was autistic, he became that, and then he became something else to me. He was, at the time, unknowable. My mid-reality had become visible, the fearful know-nothing me, that just heard the words and let them become the boy.  It would be awhile until Nugget me got stronger and took over. It would be a while until I started seeing Nat as just Nat, always, eternally Nat, and all that encompassed.  I can posit that This is Nat, but as soon as I say it, he becomes Other than that, because there is so much more.

Nat’s autism is a big part of him. But it used to be so important to me to separate the guy from the autism. Is that because back then I hated autism?  Will some people want to ban the “A-word” so that we’ll all have to say “People with autism,” to imply that there are so many other parts to those people? Or will they realize, like Sartre, that the word doesn’t touch the actual Being. Is it true that I am willing to say Nat is an autistic young man because I don’t fear autism? Nat is more than autism, anyway.

One might think we should let the Autistics or the Ones with Mental Retardation decide.  But they are all individuals, and are not monolithic anyway. Opinions abound. So who owns the rights to a term? And how much power should we allow the words to have?




Another great blog! I think maybe there is a difference in you or I (I have a ‘disabled’ sister) or others in the disability community using the word ‘disabled’ or ‘autistic’ as we know that there can be much more to the person than his or her disability. But I fight to have the general language be ‘people first’ as it reinforces in those who are less aware that indeed there is more to people with disability than just that – they might love music or be a whiz at maths – but it is so much easier to categorise and assume things about people if the general language is not ‘people first’. I agree that in my relationship with my sister it matters naught how i refer to her amongst people who know her – ‘disabled’ or ‘sister with disability’.

— added by Kate on Saturday, January 7, 2012 at 8:22 pm

Universities (special needs pedagogy) are encouraging the person first language. I use person-first as much as possible. Sometimes “autistic” just sounds less awkward in the phrasing of a sentence so I use that, too. Anyone who uses “autistic” all the time might want to try changing it up – because it can sound too defining as a label.

I have used the “R” word before but stopped, but sometimes when I am fuming it may slip but not because I am trying to hurt anyone with MR. And I think most people aren’t trying to do so, except for the people who use it as part of their daily language – they really need to stop.

— added by t on Saturday, January 7, 2012 at 8:25 pm

When I wrote a couple of books about autism, my co-author felt we should never use the word “autistic,” and instead just write about “individuals with autism.” I understood-but it made writing some sentences very awkward, and since I have yet to meet anyone who’s offended by the word “autistic,” I switch back and forth in casual speech.

And as far as people saying hurtful things, I’ll never forget hearing a PE coach talk about “this one kid who was like autistic or something, who wouldn’t listen to me.” He didn’t actually mean “autistic” in any clinical sense. He just meant a kid who was annoying and weird and distasteful. It didn’t even occur to him that he was being offensive, and I felt like I’d been slapped in the face.

— added by Claire on Saturday, January 7, 2012 at 8:36 pm

Words are very important… an adoptive parent I am amazed at how often and how many people refer to a child being “given up” for adoption as opposed to “placed “in an adoptive family ( this was prevalent most recently when Steve Jobs’ life was being talked about at the time of his death by very savvy news journalists). I think many well-intentioned people prefer to be corrected and enlightened so they don’t make a faux pas again!

— added by Amy Lampert on Saturday, January 7, 2012 at 8:37 pm

When person-first language is used as a way to separate the person from a major aspect of who they are, it becomes offensive. It is almost always used to shelter the speaker from having to deal with his or her own baggage. I am an autistic. I was born that way and will always be thus. Removing my autism – which is what person-first intends to do – denies me. Redesigns me into a more acceptable person. I imagine it would not have helped if kind people had decided it was better for black people to use person-first language during the decades they were trying to assert themselves as equal members of society. I think it would have been considered what it was: forgiveness for being unacceptable.

Jeff Gitchel
Twitter: Gitchel

— added by Jeff Gitchel on Sunday, January 8, 2012 at 12:27 pm

Another great article, Susan!

I teach at Towson University and I am the Director of the Center for Adults with Autism there. In my courses, my students and I discuss this person-centered language debate…I use the term, “autistic” and “person with autism,” although I use the term, “autistic” more often, because most of my friends and acquaintances on the spectrum (another way of saying this as well) use this term to describe themselves.

It has been my experience that if someone objects to the term, “autistic,” they have mostly been a parent with the perspective that autism is something you acquire – mostly from vaccines.

These are my own observations…


— added by Rhonda J. Greenhaw on Sunday, January 8, 2012 at 6:24 pm

I always tend to use person-first language: “I work with students and adults with autism/on the autism spectrum.” For the most part, only 1 individual I’ve ever worked with has been aware of his or her diagnosis, so it’s interesting to me to hear Jeff’s input. I think that when I use person-first language, I’m not trying to separate them from their autism, but I’m trying to show how much I believe, like Susan does, that my student or client is “more than autism.” Never any disrespect.

— added by Joanna on Monday, January 9, 2012 at 9:24 am

Thank you for this post Susan. I’m actually struggling with many of the lenses that you so eloquently describe so this was really a lovely read. We’re still fairly new to the diagnosis (1.5 years) and I have passed through a number of the stages you describe and trying very hard to mindfully move towards an integrated perspective of who our little man is. On a conscious level I obviously see him as a whole, wonderful, amazing little person but it’s aligning the inner pieces that’s taking some time.

— added by Carol Maas on Wednesday, January 11, 2012 at 12:32 pm

I tend to use both terms interchangeably, but if asked I will say I am autistic. Autism isn’t something I have, it is integral to me, but I am only partially defined by it. I prefer, “a person with Asperger’s” to, “Aspie” but that’s just me. I am an autistic person who has Asperger’s.

— added by Rory Patton on Wednesday, January 11, 2012 at 8:17 pm

I am Autistic, and prefer to refer to myself as Autistic. The majority of adults and youth I know on the spectrum prefer to use Autistic instead of person with autism. But when referring to others, I tend to follow the following guidelines:

1.) When describing people in general terms or as a group of people, use the language preferred by the majority of the people being described. (Ex. People with bipolar disorder sometimes share characteristics with Autistic people.)

2.) When describing a specific person whose preference is not known, defer to the language preferred by the majority of the people being described. (Ex. Anders Robertsson is a Deaf man from Los Angeles, and his partner, Ruth Goldberg, is a woman with schizophrenia.)

3.) When describing a specific person whose preference is known to be not aligned with that of the majority, use the language preferred by that individual. (Ex. Amanda Wood Vivian, a woman with autism, writes excellent articles about autism and disability.)

4.) When describing disability in general, defer to your own language preference (i.e. disabled person versus person with a disability) except if describing specific groups of people, the majority of whom have a preference differing from your own. (This one is murkier, and some people whom I know, regardless of specific disability, prefer to identify as disabled or Disabled, whereas others prefer to identify as people with disabilities.)

To my knowledge, the majority of people in the Autistic, Turner’s, Blind, and Deaf communities prefer to use language placing the disability as an adjective (sometimes capitalized like another proper adjective might be), while the majority of people in nearly every other disability community (i.e. bipolar disorder, ADD, schizophrenia, Down Syndrome, etcetera) prefer to use person-first language, such as person with X or person who has X. The word “people” in this paragraph means the people who are being described, as opposed to their parents, other family members, friends, therapists, or researchers who do not have disabilities.

I have also written extensively about this debate at my own blog:
The Significance of Semantics: Person-First Language: Why It Matters
Identity and Hypocrisy: A Second Argument Against Person-First Language
“People First – Create an Environment of Respect”

— added by Lydia Brown on Saturday, January 14, 2012 at 1:17 pm

Why do the people who “fight for person-first language” often quite happily use the phrase “autism families” — which is the direct opposite of “person-first”?

— added by Kate Gladstone on Thursday, April 12, 2012 at 10:13 pm

I don’t know. I use the term “autism families” and most of the time I do not use “person-first.” I don’t think there is really any perfect solution.

— added by Susan Senator on Friday, April 13, 2012 at 6:44 am

Most autistic adults prefer to be called “Autistic” rather than “person with autism.”
The people who use “person first” language consistently seem to be people who are not themselves autistic.

We say “child” not “person who has lived a short time.” My best friend is “hispanic” not “person with hispanic ancestry.” To call him “person with hispanic-ness” would mean I was ashamed of his ethnicity. It would insult him. To call me “person with autism” offends me (although I would recognise your good intentions)

— added by ASDGirl on Friday, December 13, 2013 at 11:22 pm

Personally, my biggest bugbear is with those, individuals and agencies, that force person-first language on groups that choose otherwise, such as the Autistic, Deaf, and Blind Communities, because it takes away the right to choose how to self-identify, one of the most important rights people have. So much for ‘putting the person first’!
@ Joanna: If you truly believe that Autistic people are ‘more than Autism’, why do you need to put yourself through linguistic gymnastics to remind yourself of that fact? After all, I don’t need people to remind themselves that manhood isn’t the whole of my being by calling me a ‘person with maleness’, do I?

— added by Sheogorath on Tuesday, April 21, 2015 at 5:55 am

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