I wrote yesterday about an evolving fantasy of my ideal introduction to autism and what that might look like. Later I was asked privately about ‘person first’ language. An example of ‘person first’ language is: “My child has autism” or “She is a person with autism” as opposed to: “My daughter is Autistic.” This topic comes up repeatedly so I thought I’d tackle it with a post of its own. The current language used to describe autism and Autistic people, starting with the insistence among many parents, educational institutions and the medical establishment to use person-first language (read Jim Sinclair’s Why I Dislike ‘Person First’ Language), is all about deficits, comparing Autistic neurology (inferior) to non Autistic neurology (superior) which is self-serving, biased and continues to further the general public’s misperceptions about autism and Autistic people.
Shame based language, the things we say because we don’t know better, because we’ve heard or been told it’s how, whatever the topic is, should be spoken of, is still shame based language. For a long time I didn’t understand why person-first language was objectionable. It seemed “respectful” to speak of the person first before adding their neurology. Except that autism brings with it discrimination, prejudice, misunderstanding, assumptions about intelligence or a lack of, and so suddenly all those people who are being so careful to describe this person, whose neurology is “Autistic”, are actually implying that they think autism is something to be avoided, it’s something we pity, it’s something we’d like to be sure the person knows, we “understand” and are being careful to give them “respect” except we are doing exactly the opposite. 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.
I will always respect anyone’s personal preference, but in general, I will continue to use “Autistic” because I am not ashamed of my daughter’s neurology and I refuse to convey that underlying message of ‘less than’ inherent in ‘person first’ language.
Autistic perspective on ‘person first’ language:
ASAN – Identity First Language
Shaping Clay – Person-First Language Doesn’t Put People First, It Makes Them Invisibly
Autistic Hoya – A Second Argument Against Person-First Language
Radical Neurodivergence Speaking: I don’t have autism. I am autistic.
Amy Sequenzia – I am Autistic
Referring to “autistics” makes perfect sense to me now….saying “A person with autism,” implies that autism is a disease. Wheres, saying “my autistic friend” implies an alternative neurology, and less “disease” aspect to it. Sometimes I might say “my friend, who is autistic” and not “has autism”..as a way of providing a descriptor that is secondary to the person being my friend; but, it’s certainly been a difficult transition for me, yet one that is logical. thanks for this post, Ariane.
It’s a steep learning curve for all of us, for sure!
Ariane, I agree! Person-first language singles people out, and adds too many prepositional phrases to sentences! 🙂 If I had a dollar for every email our organization received from the educational community trying to “educate” us about person-first language, when the reality is, it is not preferred by most autistic or Aspergian adults at all! Thank you for tackling this subject so graciously.
It is hard to make the switch once person first in ingrained into the way one thinks and talks. Since I found out that most autistics prefer to be called autistic, I decided to make a conscious effort to make the switch. Let’s just say the back space button on my laptop has been overused lately 🙂
Good for you Beth!
Ariane, this is an important post. I wrote about it too
Amy! Thank you so much for adding this link. I just added it to the post.
And now you can just send people to this post the next time this comes up. 🙂 It took me a while to sort out the language issue too, but I’ve settled on autistic as feeling the most comfortable (blog name notwithstanding, but you know how that goes . . .).
LOL! I do indeed!
I used to cringe over the word “autistic”. That was back when I was still cringing and fearful about what the diagnosis meant for my son and my family. I’ve noticed that the more accepting — and yes, even appreciative — of what autism means for my son and my family, the more readily I’ve described him as autistic. And when I say it I’m filled with a pride that was never there when I used person first language. Go figure.
I did too! My husband would use the word and I remember pulling him aside and telling him how much I hated it. I was also clinging to the idea that one day she would be “recovered” from it. For me the two went hand in hand.
Now? Yes, I do feel proud of my daughter’s neurology. Which doesn’t mean we ignore the difficulties she faces being a semi-verbal person who is not able to verbally communicate reliably, living in a verbal world, but we are trying to make sure she’s given tools to communicate in other ways so that when she chooses to, she is able to.
It makes me happy to see that respect for what we prefer is possible. It shouldn’t be an exception, maybe it won’t some day
I hope so Amy. I hope so.
This post is great, thank you for explaining it so well. My boy and I are currently negotiating the sea of specialist appointments involved in an ASD diagnosis, and I often wonder how best to explain it to people. I’ve felt that the terminology can sometimes make it sound like he’s broken, or afflicted with something. He’s not afflicted, he is different, and often these ‘issues’ are the things that make him so freakin’ awesome.
Oh it’s so great to hear “new” parents who’ve already figured all of this out! Yay!!
Well don’t throw me a party just yet, I’m still there’s loads of things I’m going to get wrong in the next little while! I actually wrote a piece that’s being published next month on a new news website here in Australia (sort of a mother’s lament blaming myself for not noticing things earlier and never being able to switch off, summing up with the idea that I shouldn’t be too hard on myself and my boy is a gem) and I worried so much that I’d made it sound like I think he’s ‘sick’ that I checked the article a billion times. In the end I put in a very clear line stating that there is nothing wrong with my boy, and re-submitted it to the editor. Fingers crossed I don’t offend anyone!
Well, you might. I certainly have offended a great many without meaning to and some, I honestly didn’t care if I offended. Those of us who really want to make change are trying to understand and learn and we aren’t going to get it right all the time. We’re going to make mistakes. But as long as we keep trying, keep an open mind, listen, learn, we’re going to be better off than if we don’t do those things!
What you said is SO true a parent of a neuro-typical child doesn’t go around saying my child is neuro-typical so why should you go around saying my child has Autism.
Interesting. I refer to my son’s autism as a thing that he has, because I think it doesn’t define who he is; like how I would say he has brown hair or green eyes… He is a BOY with autism. No disease, no disability, no politically correct language. Just a way of thinking about a child who has a lot of interesting things about him, including autism.
Ariane, you express it all so well. I never liked the “person-first” language. Why should anyone have to emphasize they are a person, a human being? Person-first language in itself implies that someone being autistic makes her less of a human being, less a person.
People are not “human’s with African/Asian/European DNA.” I am not a HUMAN American, as if there were some other type of American.
No one should ever have to claim their humanity in describing themselves. And to me that is what person-first language does. It emphasizes that “hey, my kiddo is still a person!” That is not an issue; and if it is for anyone, then that to me is a problem.
My child is a person, THAT IS A GIVEN; she is autistic, like she is a girl, an American, mixed-heritage, funny, cute, the light of my day. I don’t have to justify her humanity in describing her, and I will not.
The underlying notions regarding ‘person-first’ speech are not ‘a person who HAS a disease’, but rather ‘a person who IS a disease’. This is the unconscious understanding in many, perhaps most people. The unconscious is the realm of instinct; and whenever instinct competes with intellect, instinct always wins. ( Clotaire Rapaille).
A key matter in understanding instinct in most people is that the ‘rules’ of instinct correspond closely with those found in systems of magic(k) – instinctual prejudice came first, and magic followed as a system of legitimizing myths (to maintain dominance hierarchies, and deify leading adapts).
A key notion of magic(k) as found in instinct is ‘(magical) power can only function in (defined) perfection’. This, coupled with ‘the world is just’ and ‘everyone starts from the same blank place’ results in all deviant persons being seen as ‘traitors to humanity’ (because they chose to be different) and also ‘a drain upon the (magical) power of the in-group’.
The only solution understood for such ‘evils’ is to destroy’ them (as scapegoats) and thereby restore the (magical) purity to society – a necessary state, required by instinct’ drive toward preeminence
Actually, the underlying notion behind person-first language is ‘person who has an undesirable trait’. As we know, however, to 63% of the autistic people who responded to NAS’s poll on this issue, autism is far from being an ‘undesirable trait’, and only 21% of autistic respondents preferred person-first language.
Bravo. Your attitude is the norm among autistics, but uncommon among too many well-meaning neurotypicals.
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And three years after this was posted, I’ve finally come up with the perfect ‘soundbite’ for people to put on pictures and spread as a meme: Disability is natural, disability existing outside of people is not. Stop attempting to achieve linguistically what will never occur in nature.