4/01/2014

Why I use "autistic" rather than "person with autism" + an indexed overview of the debate

It's Autism Awareness Month, and I'll be trying to promote understanding and acceptance on Twitter.  Hopefully, some of the tweets will reach people who don't know me.  Some may be confused or put off by my use of "autistic people" rather than "people with autism." If that's you, welcome!  I wrote a blog post for you because this is a complex issue not easily discussed in 140-character bites, for reasons I'll explain momentarily.

If you're new to the autism community, you're familiar with other disability groups, or you've worked in education/social service fields, you might be used to saying "person with autism," and you might be disconcerted at all the people referring to themselves, family, and friends as "autistic" or "autistic people."  You might see person-first language ("person with") as more respectful, and wonder why I or anyone else would want to use different language.

It might seem obvious that "person with autism" is the most respectful term to use, especially because many disability groups do prefer it, and many government agencies insist on it.  But not all disability groups are the same, and many people on the spectrum (and their families) are choosing different language.

Yes, it's a deliberate choice.  And it's not because people on the spectrum don't know better.  Having lived with a disability/been disabled their whole lives, they're intimately familiar with issues of stigma and ableism. No one has more of a vested interest in respecting the personhood of people on the spectrum than...people on the spectrum.

And for them, the issue of terminology is complicated.

The majority prefer identity-first language ("autistic people" or "autistics"), but some people prefer person-first language ("person with autism"), and a smattering of other labels exist:
Some people feel very strongly about calling themselves Autistic (with a capital A), others like to be referred to as a person with autism, and still others like to say they’re on the autism spectrum. Others like to be called Aspie or AspieGirl. Some say they have autism. And then there are less common labels such as a person with awe-tism, spectrumite, or Aspergian. Steven Coventry has art that goes along with his preferred label of Aspienaut.  Some like Erin Clemens don’t care about the terminology at all, as long as people are respectful. Elena Mary Siff says her son prefers no label and just wants to be seen for who he is. Some like Carolyn Gammicchia want to be called by their first name...As Dennis Debbaudt states “...My son refers to himself interchangeably as having autism, I’m autistic, I have autism…” -Debra Hosseini
 However, all agree that the person being labeled is the one who should decide what label is appropriate.

Person-first language is supposed to make people focus their attention on the person, and not focus it on their disability.
”Person with autism” puts the person first and the disability/condition last. Autistic person puts the condition first, as if its the most important part of the person. -anonymous, quoted by Aspergers and Me

My son has autism rather than my autistic son. He is not autism, it is just a part of who he is. He was a person before he was a disability. -anonymous mother, quoted by Aspergers and Me''

When we start by focusing our attention on what people cannot do, we never make room for what they might do. By putting the person last, this is what is being done...We assume they will never do for themselves, so how can they ever be a productive member of society? -Mary Tobin 
Many people object to this line of thinking for the following reasons:

1) There is no incompatibility between being a person and having a disability, but the need to deliberately emphasize personhood implies that there is.  It is wrong and ableist to think that having a disability makes you less of a person.  To use language that assumes a dichotomy between the two is to tacitly accept that there is one.
The dichotomy between being a person and having a disability is a false, and useless, one. It's based in the notion that people with disabilities that they can't hide or that we can't pretend to ignore aren't people. -Julia Bascom

the idea that one has to choose between seeing the person and seeing the disability. Why should that be a choice?...Such language betrays the assumption that disability renders one less of a person. If that assumption were not present, there would be no reason to foreground the fact that we really, really, really are people, and that one has to put the disability aside in order to see how really, really, really human we are. -Rachel Cohen-Rottenberg

When you tell me you see me as a person first, I’m confused.  Did you not see me as a person before?  Can I not be disabled and a person?  Am I not a person unless you stop seeing my disability? -Fogwithwheels

When we have no particular issue with some aspect of a person, we do not make sure they understand we are aware they are part of the human race. -Ariane Zurcher

I don't have autism. I am autistic. This is important to me. It also doesn't mean that I "see myself as a disability first and a person second," whatever that is supposed to mean. In my eyes, I'm Julia. Just Julia. -Julia Bascom

2) Person first language assumes that a person and their disability can be cleanly separated, perhaps the way a person with cancer can be separated from the cancer.
You would never describe someone as “cancerous”, you would say they have cancer. Cancer is not how you define the person. If you had a permanent bruise on your shoulder, would you always want to be called “the bruised lady”? -Katie Nelson
Developmental disabilities don't work that way, though, especially ones like autism that affect how you perceive, move, think, feel, and behave from birth.  The way you experience the world and respond to it are fundamentally different if you have an autistic brain.  In this way, autism is similar to other identity markers that affect how we perceive, think, feel, or behave, such as country of origin, ethnic background, or sexual orientation.  We see no harm in talking about "Iraqi people" or "Iraqis," "African American people" and "African Americans," "bisexual people" and "bisexuals" so why not "autistic people" or "autistics?"

when people say "person with autism," it ...suggests that the person can be separated from autism, which simply isn't true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin. -Lydia Brown

I am usually a “person with a purple shirt,” but I could also be a “person with a blue shirt” one day, and a “person with a yellow shirt” the next day, and I would still be the same person, because my clothing is not part of me. But autism is part of me. Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works. -Jim Sinclair

I cannot separate out which part of my brain are wired because baby I was born this way and which parts of my brain should be marked off as AUTISM.  Nor do I particularly care, to be honest. I am Julia, and a significant fraction of Julia is autism...being autistic fundamentally shapes how I perceive and interact with the world, with a million cascading and subtle consequences. I would not be the same Julia I am now without whatever parts of my brain can be marked AUTISTIC. -Julia Bascom

I prefer aspie or autistic person. I cringe at ‘person with autism’, because it makes it sound like the autism is detachable from me. I consider autism just as inherent to my personality as my sense of humor or my IQ. -anonymous, quoted by Aspergers and Me 

The phrase “person with a disability” seems like something that you’d find on packaging for action figures...“person with a disability” sounds like “Magneto action figure with detachable cape” – like the disability is an extra that comes with the person, but not really a part of that person. Lots of disabled folks and communities have valid reasons for wanting people to use person-first language...and I respect that. However, when non-disabled people insist on only ever using person-first language, I often feel like it’s because they don’t want to play with the action figure until they’ve detached the disability, so to speak. -Zoe

The assumption that you can separate a person from their autism is hurtful both because it rejects who the spectrum person currently is and because, at present, there is no way to make the separation.  So person-first language communicates that not only is a person's way of experiencing and behaving unacceptable now, but the person can never be completely acceptable to the speaker.  It's not intended as a rejection, but often has that effect anyway.

The overwhelming message of “person-with-autism” is always “we wish we could really remove the autism from you, because it’s offensive, and we’re sure you’d be more acceptable without it.” Of course, it can’t be removed. At least not in the near future. So, until then, the autistic is stuck with his unacceptableness, no matter how kind and apologetic the label appears to others.-Turtlemoon

When parents insist on pushing this language onto their children, it's even worse, because the parents are saying that they want the child to view him- or herself as someone apart from the perceptions of their senses, their emotions, and their rational thinking, all of which are inextricably part of the autistic experience. That who we are is something other than anything we think or feel or experience, and that those other things should not be considered important or articulated. They are saying that what makes the child valuable is that he/she is a child, but that their thoughts, feelings, and ways of making sense of the world are not only non-valuable, they are only an afterthought. Rather than putting the person first, "person-first" language removes autism from the spectrum of human experience.-Michael Monje Jr.

3) People often criticize identity-first language because they interpret "autistic" as meaning that autism is the only quality a person has, or the most important quality, or that the person somehow reduces to autism.  I'm not sure why they interpret it that way, but that's not what people mean when they use "autistic."  It's meant to be interpreted like other adjectives that describe characteristics, such as "nearsighted" or "lesbian."  "Nearsighted people" are not reducible to their nearsightedness, and "lesbians" are not reducible to their sexual orientation.  People who use identity-first language do not think autism is all a person is, just an important part.
being Autistic is as much a part of our individual identities as being American, Christian, or Asian are for me. I do not refer to myself as a person with Americanness, Christianess, or Asianness, and thus I am not a person with Autism either. It is not an inherently good or bad thing to be American, Christian, or Asian, nor is it an inherently good or bad thing to be Autistic. It is simply a part of my identity. Autism is not something from which I can or ought to be separated.-Lydia Brown

I am no more defined by my autism alone than by my hair color, and yet no-one ever questions it when people are refered [sic] to as, say, blonde. If autism wouldn’t be viewed as something less than, people wouldn’t find “person with autism” to be the more respectful term. -anonymous, quoted by Aspergers and Me

The attack that calling someone autistic, means you are ignoring the person behind the autism, is a presumption that the autism and the person are separable, which is not self-evident. It is also a presumption that calling someone autistic means we have forgotten the rest of their identity. This is rather absurd; it would be like saying that calling someone “Christian” means you have forgotten their gender, their hair colour, their relationship status, etc. This idea – that calling someone autistic appears to cancel out other aspects of their identity – again seems to turn on the notion that knowing or seeing someone as autistic, damages or hurts them in some way. -Autism and Oughtisms

When disabled people, Autistic and non-autistic, say that they use identity-first language to refer to themselves, a common retort is “I don’t understand why you would define yourself by your disability.” To me, this doesn’t make sense. I call myself disabled because I don’t think my disability needs to be held at arm’s length, not because I believe that I’m autism on legs. -Zoe 
People who use "autistic" also argue that autism can be worth acknowledging without being the most important part of a person.
They seem to be saying that if I say “autistic person” then I’m claiming that it’s the only quality a person has, or that the person IS autism in some weird, existential way. However, the bit I really find interesting is the claim that “autistic person” is implying that the autism is the most important part of a person.  The thing that strikes me about that is that the english language does not work that way. We use adjective-noun pairings, so the emphasis is actually on the second word, not the first. If I describe a color as being “bluish green” do you visualize something that is closer to green or closer to blue? What if I say “greenish blue”? In English, the first word is a descriptor or modifier of the second word, not the other way around. -Aspergers and Me

Saying “person with autism” suggests that even if autism is part of the person, it isn’t a very important part. Characteristics that are recognized as central to a person’s identity are  appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about “male” and “female” people, and even about “men” and “women” and “boys” and “girls,” not  about “people with maleness” and “people with femaleness.” We describe people’s cultural and religious identifications in terms such as “Russian” or “Catholic,” not as “person with Russianity” or “person with Catholicism.” We describe important aspects of people’s social roles in terms such as “parent” or “worker,” not as “person with offspring” or “person who has a job.” We describe  important aspects of people’s personalities in terms such as “generous” or “outgoing,” not person first language as “person with generosity” or “person with extroversion.”Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society. It even affects how we relate to our own bodies.-Jim Sinclair
As Alyssa points out, those who prefer person-first language (usually parents or other family members) still have some intuitive understanding of autism as a trait and an adjective.  Some call themselves "autism parents," "autism moms," or "autism siblings."  They appear to recognize that the adjectives we put in front of ourselves are important parts of who we are and how we want others to see us.  Of course, raising a child on the spectrum is an important part of who they are. So, what happens when parents recognize "autism" as a part of who they are, but not who their child is?  Whether on purpose or not, this amounts to telling the world to view autism as more essential to the parent than to the child of whom autism is actually a part!  Whether you view autism as a good, bad, or neutral characteristic, this is obviously absurd.

4) Because autism affets a person's life so pervasively, drawing attention away from the disability, as person first language tends to do, is a lousy idea.  Insisting on seeing a person while also ignoring their autism/autisticness invites one to wonder whether other reminders of disability--such as attempts to discuss the impact of autism on one's life--will also be ignored.

If one is not supposed to talk about autism, then how can one talk about vast swaths of experience, or deal with problems that arise in daily life? How can one explain in a work context why one can network, but not in a noisy, crowded bar?  Or to a partner that deep pressure feels good but light touch makes one want to jump out of one's skin?  Differences exist, and will be visible whatever terminology we use--just as a wheelchair exists, visibly, whether we talk about it or not.  And if atypical behavior is left unexplained, other people will come up with much more sinister explanations.

Ignoring disability doesn't stop us from feeling different. It just makes us feel like our differences are too shameful to acknowledge. -Real Social Skills (@rsocialskills)

If autism is an important characteristic and an important part of people's identities, then potential friends cannot simply ignore it.  To befriend a person while ignoring a characteristic that's an important part of their identities is not a full, real friendship, but always a partial and conditional one.  You're not friends with the real person, but with the person you want them to be.  People who prefer identity-first might make the following analogy: if you accept everything about a person except that they're gay, are you really accepting them?  If you accept everything about a person except that they are African-American, have you really accepted them?  If you accept everything about a person except autism...
Person-first language doesn't put people first, it makes them invisible. -Michael Monje Jr.

5) Even if it were bad to draw attention to a disability, person-first language doesn't prevent this.  If anything, it's clunky sentence structures draw more attention to the disability, and the need to use a euphemism implies that it's something that needs to be hidden.
 Rather than taking the emphasis off my condition, it makes it more conspicuous by creating a wordy, unwieldy construction in the language that is harder to say, requires more conscientious use to maintain consistently, and worst of all, makes autism a passive characteristic (both grammatically and as part of my life) rather than an active adjective. And my autism is active. -Michael Monje Jr.

By using this language,...it sounds like we need to apologize for being Autistics, reminding the rest of the world that we are “people too.” The message is that, if we say that we ”have autism” we might look “a little better” not so “broken.”  I am not broken.-Amy Sequenzia

If disability is nothing to be ashamed of, why do people keep making up euphemisms for it? -@aspergiajones, author of Letters to Aspergia

You might be asking, but aren't there good things about drawing people's attention away from a disability?

Of course.  The person using person-first language probably understands that one can have a disability and still be fully human.  But not all listeners will feel that way.  For people who are already uncomfortable with disabilities, using "autistic person" might reinforce their discomfort, while "person with autism" might remind them of the person's humanity.  That might be why some parents call their child a "person with autism," to protect their child from the audience of people-in-general who know little about autism and are uncomfortable with disability.  They might be hoping that using person-first language will make the general public more likely to treat their child as a person.
a mother sitting next to her responded, "I come from a time where that word, 'autistic,' had -- still has -- a negative meaning. It's offensive. When someone refers to my son as 'the autistic,' I cringe at that word; I get ready to defend him." -anonymous mother at the 2011 Adult Services Subcommittee meeting, quoted by Lydia Brown

 What I won't do is I won't let myself refer to him as my autistic son because...I don't want the big word to eclipse his greatness because he is SO much more than the autism that affects his wiring...In the educational setting, which is where I mostly reside, [using the word "autistic"] leads to a shut down of expectations and damage to the individual. -Autism Sparkles

 But whose opinion towards autism matters? If you’re worried about society’s attitude towards autism – you know it’s not the end of the world but society thinks it is – then you may push for the “has autism” designation. But if ...you want to change it, you might actually encourage people to use “autistic” as a show of pride and intentional ownership of the supposed trait. -Autism and Oughtisms
It's important to acknowledge that in this situation, person first language isn't really for the spectrum person's benefit, at least not directly.  It's for the general public's beneit.
I think able-bodied people need euphemisms to help them get over their discomfort with disabled people. -@RobertHWoodman, 3/29/14
People on the spectrum certainly have the option to protect themselves by choosing person-first language, just as parents do.  Many of them choose not to anyway.  I'm not sure why, but I would guess it's because accommodating people's prejudices isn't reliable protection. Using person-first language might distract people from their underlying attitude that visibly disabled people aren't fully human, but it doesn't change those attitudes.  Being on the spectrum is likely still dangerous no matter what a person is called.
If I say that I am autistic and that means that you can’t see the individual intertwined within? That can’t be undone with a phrase such as “with autism.” -Jean 
Either way, the person on the spectrum is the one most hurt by others' prejudices, and thus the one who should decide whether to accommodate them with person first language.*

Which brings us to the final and most important point:

Ultimately, the final decision must lie with the person on the spectrum who is affected, not the person addressing them.  Their brain is the one being described, their identity is the one at stake, and they are the ones who must live with any social fallout from how they are labeled.

That doesn't mean one shouldn't have a default term.  I personally use "autistic people" because so many people I know prefer it. But if I met someone on the spectrum who prefers "person with autism," I would be wrong to insist on my default.  I'd be just as wrong as a person calling someone who prefers "autistic" a "person with autism."
if someone with a disability is telling you how they want you to refer to them, the most disrespectful thing you can do is tell them they are wrong and that you know better. Do you want to respect autistic people and look at them as people rather than afflictions?  Then listen to them. Hear what they have to say. Don’t argue with them and tell them they are wrong for stating their preference about how people talk about them. That is the least person-first thing you could possibly do. -Jean

It is profoundly disrespectful to insist upon person first language when the person or people you are describing do not wish to be described this way...Part of respecting my agency is respecting how I wish to identify, even if you don't like it. -Kassiane

When a person has a clear preference, other people should respect it. If they don't, they are being disrespectful, whether or not they are also saying how much of an advocate for people with disabilities they are. -Paula Durbin-Westby

When very well-meaning and well-intentioned advocates...such as yourself insist that we use certain language to describe ourselves against our own stated and explicitly argued wishes, you are essentially telling us what offends us. -Lydia Brown


we should not have to deal with being “corrected” by allistic people, or have our preferences ignored in the name of “respect.” (For the record, it is not respectful to deny a person the right to self-identify. It is, in fact, quite disrespectful.)-Aspergers and Me

And when we fail to respect the preferences of the person we address, it causes real harm and contributes to social problems that affect autistic people in general.
we live in a society that is really bad about giving people with disabilities any sort of self determination at all, especially people whose disabilities are developmental. Autism is one of these. That means autistic people are going to be extremely touchy about anything that even smells like taking away self-determination, and not respecting language choices is one of those things. - See more at: http://yesthattoo.blogspot.com/2012/07/seriously-guys-pfl.html#sthash.cAAgKjz2.99BXFjmB.dpuf
We live in a society that is really bad about giving people with disabilities any sort of self determination at all, especially people whose disabilities are developmental. Autism is one of these. That means autistic people are going to be extremely touchy about anything that even smells like taking away self-determination, and not respecting language choices is one of those things. -Alyssa

This person actually directly told Lydia (Autistic Hoya) that she was wrong to use the term “autistic person” and that it is more respectful to say “person with autism.” This person told an autistic person that the way they identify is incorrect, refused to respect both her choice and the general autistic culture, and insisted on using a form that most of us do not prefer... I find this to be yet another example of how autistic people are consistently pushed out of our own advocacy...it should also go without saying that autistic people should be included in our own advocacy, and our voices should be heard. Yet all too often, we are not included, and our voices are not heard. -Aspergers and Me
we live in a society that is really bad about giving people with disabilities any sort of self determination at all, especially people whose disabilities are developmental. Autism is one of these. That means autistic people are going to be extremely touchy about anything that even smells like taking away self-determination, and not respecting language choices is one of those things. - See more at: http://yesthattoo.blogspot.com/2012/07/seriously-guys-pfl.html#sthash.cAAgKjz2.99BXFjmB.dpuf

I think respecting people's label preferences is putting the person first, whatever they choose to call themselves.

*You may be thinking of exceptions.  There are a few, but not as many as people think.  For example, some children are very young and not able to make this decision yet.  In this case, their parents must make an educated guess what they'd prefer. Some people don't have a strong preference, but there's no way of knowing who will or won't.  It's best not to make assumptions, and just let people tell you if they do.
 ***
This topic touches a nerve and a lot of people have written about it, more than I could discuss here.  So I've collated all the posts on the subject I could find, both to show the range of opinions out there and to allow those interested to go into depth.  If this list is incomplete, please let me know what posts I missed.

People Who I Know are Autistic
 People who as far as I know are not autistic