The problems with person first language have been talked about extensively in the autistic community. Many autistic people have expressed a strong, explicit preference for identity first language. And yet, we’re still treated to comments like this one (paraphrased from a comment on another blog):
I work with children with autism and I always say child with autism because they’re children first and autism doesn’t define them. Also, I say typically developing child instead of normal, because normal has negative connotations. Words are important–they reflect how you think.
My first reaction to reading that type of comment is always, “aren’t the typically developing children also children first?”
Or do we just not need to be reminded that they’re children?
If you don’t use normal because it has negative connotations, does the same logic apply to the use of autistic? Or does autistic exist in some special category of word that’s not bad but also unspeakable?
I fail to see why it’s okay to use the identity first descriptor “typically developing child” but not the identity first “autistic child.” Why do we constantly need to be reminded that the autistic kids are people? Is it so easy to forget? I would hope that no matter what label I use to refer to myself it be would obvious that I’m a person.
Anyone who needs to constantly remind themselves that disabled people are people should probably spend more time examining their own beliefs and less time telling other people how to speak about themselves or their children.
Using person first language to refer to autistic children and identity first language to refer to typically developing children isn’t inclusive. It’s othering and unnecessary.
Person first language arose because disabled people were being referred to by demeaning and pejorative terms that had an identity first construction. In some communities, where a preferred identity first term hasn’t arisen, person first is still the preferred construction.
Autistic people, however, have repeatedly expressed a preference for identity first language. For some reason, nonautistic people who think they know better continue to ignore our (loudly and oft-stated) preference. To those people I say, “If you truly believe we’re people, first or otherwise, then listen to what we’re saying and respect our preference.”
Autistic is not a dirty word. When you act like it is, you aren’t helping autistic people. You’re contributing the very stigma that you pretend to abhor.
———–
One of my wonderful readers brought this post to the attention of the folks at the Yeah Write Writer’s Challenge it was made an Editor’s Pick. I even got some swag. 🙂
Musings of an Aspie 
Amen.
🙂
Lol
I struggle with having to switch back-and-forth between identity-first language in my personal writing and person-first language in my academic writing. The special education community seems steeped in “person with ____” (insert clinical label or disability here) phrasing. It does seem strange that some professionals continually need to remind themselves that autistics are people as well — of course they are.
Perhaps I’ve found myself questioning these assumptions about the language of disability more often as I’ve started referring to myself as an autistic woman — claiming that identity for myself.
I really feel for people who have to follow academic rules regarding person first language when they use identity first to refer to themselves. That sounds like a lot of mental gymnastics.
I had a professor (a speech pathologist specializing in pediatric autism) who said, nearly word for word, what you said in your paraphrased comment in response to me (I admit she didn’t know I am autistic) explaining to a classmate what the term “stimming” means using identity-first language. I honestly had to read it three times to convince myself you weren’t quoting her directly. There is no room for discussion in a lot of academic programs like that. I can’t speak for askanaspergirl, of course, but only for myself. In my experience though, language choice surrounding disability is completely black and white in a clinical setting. You are a good/caring/admirable/respectful for using person-first language, and you are bad/dehumanizing/embarrassing/disrespectful if you use identity-first language, so much so that it factors into your academic grades. It is incredibly confusing (or at least it was for me) to have to push aside my own very personal, very strong, very thought out preferences in favor of ones I fundamentally disagree with, without being offered any opportunity for discussion.
When I use identity-first language in academic settings (mostly 1:1 conversations or with fellow grad students), I try to introduce the idea of community language norms (goes something like this): “If a disability affects a significant portion of your life, it becomes part of your identity and a way you describe yourself. So some autistic people use identity-first language to convey this experience.” There are some classes where I know I’m expected to use person-first language, but I try to get my foot in the door anyway (it’s a process).
I would say that’s an excellent way to phrase it, askanaspergirl! Can I quote you on that?
😉 tagAught
Thanks — you’re welcome to do so.
That comment pattern is so common that I really didn’t need to paraphrase any one person.
It’s sad that actually disabled people end up feeling so alienated when they try to into a field that works with other disabled people. Also, I hope you’re doing okayish? I’ve been thinking about you lately – missing seeing you here as often and also wondering how you’re doing.
Personally, I use ‘majority view’ language; that is, language preferred by the majority of any given community (Autistic person, wheelchair user, deaf person, person with Downs Syndrome). I then append a note stating I’ve done this because it’s more respectful than using nothing but person-first language regardless of a group’s preferences. I’ve never had my marks reduced yet!
This made me stop and think for a minute. Thank you. . . and it seems a few of us in this week’s challenge have similar themes about how words can influence or reflect mindset.
I’m always happy when a post gets someone thinking! 🙂
Great post and definitely worth giving more thought on my part.
Thank you – it’s so good to hear from people who are open minded. 🙂
This is not so uncommon even in scientific papers the person and object can be the opposite way around to add some ‘spin’ to the literature. What is important to recognise and infact quite critical is that ‘pronoun inversion’ and other ways of thinking and writing provide for a broad spectrum of neurodiversity as opposed to language that in itself, has restricted diversity.
It should also be recognised that that kind of person first language is often seen among people who are distressed: Depressed people and people suffering from anxiety, post traumatic stress disorder and all manner of other conditions frequently seen in those on the autistic spectrum, and yes, also among those who would be classified as neurotypical.
Although many on the spectrum are quite high functioning, if not exceptional, there are still those that have great difficulty, recognising that all people at some point in their life (and indeed things that aren’t people) can have great difficulty from the situation and environment they are put in or is around them and that can lead to all kinds of distress and panic, not matter what or how you think.
Some examples of ‘spin’ in literature include, literature discussing causality of various ailments often attributed to side effects of some kind of drug or medicine… e.g. people who like rocket grow beards as opposed to people who grow beards like rocket.
Until there is some common ground, and considering various ‘language’ and ‘neurotype’ barriers, then there are going to be a great number of people for whom talking and being talked ‘about’ causes no end of difficulty. Dyslexia and Hyperlexia are often common on the spectrum and the definitive ‘Theory of Mind’ test (The Sally–Anne test) as I am aware are as a result of neurological function and not purely a learned procedure. This is, I think , more or less proven due to recent advances in genetic testing, and even if those conditions ‘run in families’ and some element of social interaction within the family also accrue to the point where any underlying conditions precipitate out in to stronger forms than just the genetics would present… That still strongly points to a heritability and diversity created from heritability in not something that I would decry infact that is something I believe is necessary for human development as a whole. Because without diversity, especially in the way people think, everything would start to slow down and stagnate as a point of equilibrium is reached.
Great point well made, as usual! Thanks Cynthia
Thank you 🙂
An excellent point that I had not considered before. Thank you.
Thank you! 🙂
… since I’m new to this perhaps this comment will shed light on a different perspective – tho I may be totally off-base – and I certainly mean to offend NO ONE but if you have read some of my posts – I mentioned sharing with my closest friend & family my discovery & revelation of having Aspergers … the reactions are interesting bc they are nearly all identical.
I have taken to mentioning it more frequently to more (selected) aquaintences bc I’m conducting my own little survey. So here is the response – almost completely identical in every situation
Me: Have you ever heard of Asperger’s Syndrom?
2 most common answers from person(s):
Person: No. What is it?
Person: …I think so – is that where …(proceed with description of some physical disease)
Me: It’s a form of autism
Person: oh… really …
Me: Yes. I have Asperger’s
Person: No you do not. You are not autistic!
I try to use the phrase ” ‘extremely high functioning’ form of autism” to help explain Aspergers, but this does not help define Aspergers. The person is always locked in on the word autism.
Very rarely a few people will make some remote comment like … ” you mean like in that movie…? – you mean Rainman!?”
After this brief exchange there is no further interesting conversation, no intersting questions asked by the person. The subject is changed.
Their loss in my opinion, since i find the workings of the human mind – especially mine, to be extremely interesting!!
You see, all of these people I come in contact with know someone who has an.autistic child, or adult family member. They all know how that person looks, acts, functions. In the mind of all these persons autism means only one thing:
You can only speak unitelligable words, mostly grunts, or shrill laughter or screaming. You drool. You are simply profoundly retarded.
Before I ever heard of Asperger’s, I met people with autism who are as I described. But, I argued with one mother in particular, bc I was convinced, after spending some time with her 19 year old son, that he could learn to communicate more clearly, he could be or could have been taught to use the bathroom and not be in a diaper. It has been my uneducated, unkowledgable, non-degreed observation that some things can be taught to any human being.
But I have said all of this to respond to the Person First topic with this one comment:
People have mind-sets about what they think autism means. The additional descriptive words like ‘spectrum’ seem to go over their head. When your own child-husband-sister-brother- whoever it may be, is not interested enough to study more about the subject – and when people degreed in these fields misrepresent as you described, then the mindsets can not change.
It remains unfortunate the way in which people limit themselves in aquiring knowledge on a subject, and even using the knowledge to grow.
Stagnation in knowledge is as dangerous (and boring) as ignorance.
It’s true – there is tremendous stigma and stereotyping around the word autism and what it means to be autistic. Adding on things like functioning labels just makes things worse because then people think there is “autistic” and “not that autistic” which only confuses them more.
I am familiar with this type of response. I remember from a very young age hearing thing like “don’t do that, that’s what autistic people do” (bang head against wall, etc). I was amused to hear a similar comment recently while arguing about how eggs had to be prepared… from someone who still appears to be in denial that I could possibly be that way. It seems that while the traits can be recognized, labeling them makes it into some foreign thing. Like perhaps how they see other autistic people. For a long time when I was a kid, I remember hearing the term autistic and thinking people were saying “artistic.” I was quite satisfied as I liked being considered artistic :P. I don’t remember all the circumstances in which I heard this applied to me, since I misunderstood what it meant at the time… I know that I wasn’t diagnosed and there was denial of things being “wrong” but evidently the description still came up.
TW (sorry) … The R-word, used in context relating slurs against me in context of a particular time and place that was less tolerant.
I had similar experiences in the 1980’s… Teachers telling me to stop acting like a retard … for fidgeting or pacing etc.
One time I had a teacher object to my stimming by asking if I was autistic in front of the whole class.
My response was something like ‘I don’t know, what’s that?’
His was something like it’s a type of retarded where… (actually somewhat more accurate description of autism, including specific mention of one of my stims I only did at home that he probably did not know I did)
I replied that I wasn’t retarded but that was otherwise a fairly accurate description of me. This last sentence was pretty close to the wording I used .. in elementary school.
On some level I get why this is done. There are without a doubt way too many people in this world who think “autism” => r______. Those people are definitely a problem. And now a rational-thinking NT goes and says “Autistic people are great people, just as everyone else! I’ll just say “person with autism”, so those people who only half-listen anyway will not pay much attention to the autism. Of course autism by that becomes this horrible thing someone has, and no one should talk about it. The autism should be hidden.
Or maybe it is even worse: Maybe people working with children by this try to get the poor children to think of themselves as exactly that. “A child like all the others” (i.e. a child that is specifically NOT like all the others) with a fatal flaw: “Autism”. Something that belongs at the end of everything in language. Something not to be shared.
I just thought back to an event in my early childhood (1st class I think). Where I grew up lefthanded children still were trained to use their “right” side. This slowly started to change when I attended primary school (Be aware this was in the year 1994). I, while being lefthanded, startet writing some words in kindergarten and (at that time) was not trained to my right hand. I remember sitting at some sort of talk/presentation mainly directed at parents where a woman loudly announced: “Nowadays children who prefer their left hand can lead a near to normal life!” This made me, an otherwise small and quiet six-year-old, so angry, that I ran out of the hall.
My point being, no matter if we are talking about an autistic person, a lefthanded person or a person with whatever makes them different from the mass, should those differences not be embraced? Isn’t that what makes humanity fascinating? Why should traits that differ from most be hidden?
Especially in children! I want children to go to each other and ask questions like “Why are you spinning that pencil all the time? Does it make you feel better?” or “You can write with that hand? I hd no idea that could work!”
But like this children are raised to think “I have a flaw. I will never be as good as the other children”.
Yes to all of this! Especially your last paragraph. Children should be encouraged to share and talk about their differences in positive ways.
Big yes to this! It is for exactly this reason – the hope that my child and her classmates will talk openly together about how they view the world, how they feel about things, what interests and excites them, so that they can find as much common ground as possible, and understand and appreciate their differences, without being hamstrung by loaded vocabulary – that so far I have declined to introduce her to the word ‘autistic’ at all.
I hope that you’ve told your daughter that she’s on the spectrum. It’s important for autistic kids to know why they feel different from their peers. Those of us who grew up with an explanation tended to make up our own and they generally weren’t positive.
I know exactly how it feels to grow up without an explanation – I am still unpicking the damage! Neither of us has a formal diagnosis so there has been no official discussion of her ‘differences’ with ‘professionals’. But at eight years old she is very much aware that she is different to the majority of her peers and that this can sometimes cause difficulties, and there is much informal discussion at home and, increasingly, at school (her teacher this year is almost certainly an undiagnosed aspie and has been incredibly helpful). We have come a long way in the past 14 months, from the two of us being at a very low ebb just prior to self-diagnosis, through frustration as we began to understand ourselves better but still struggled to cope with a lot of stuff, to a point now where we are starting to really thrive. So far we have avoided putting a label on it for her, but I think we will do that fairly soon now…
I guess I am trying to give her an explanation in language completely free of negative associations, until such time as I am sufficiently well informed and she is sufficiently at ease with herself for us to tackle the label issue.
Yes, that makes sense. I had a lot of difficulties with labels at first and had to come to them in my own time, as we all do. You sound like a great parent. You daughter is lucky to have you.
Oh wow, it must be quite a journey for both of you to be making together. And I apologize for not remembering/realizing that you are also on the spectrum. I’m glad you’re making your way to giving her a label to use (which is of course just one tool out of many that she’ll find helpful) and that you’re both starting to thrive in light of your self-diagnosis. Stories like yours make me so happy. 🙂
It doesn’t help when others in the school community are already using the autistic label in ways which make my toes curl. At some point I fear I will have to get out there and reclaim it… my inner activist is stirring!
It is indeed an amazing journey. Your blog has been enormously helpful to us – thank you! 🙂
Yes! Reclaiming is something I’ve thought a lot about. Likely a long slow process, but we have to start somewhere.
Thank you for writing this…I wish ALL people who work with anyone on the spectrum, all parents and friends of…would read this and BELIEVE it…hmmmm How can we get this out there more? If I had Facebook I would Facebook this link…maybe I will email it!
It gets so frustrating!
It’s maddening. Especially when people try to put themselves across as holier than thou while correcting an autistic person who is speaking about themselves. Gah.
Some people, I think, believe it’s okay to correct an Autistic person about how to refer to autism because they think that if they’re having that conversation with you, you can’t be *really* autistic. So your preferences don’t count.
Or “poor you, no one ever taught you how to advocate for yourself in the RIGHT way, so here I come, your saviour in shining armour, to teach and enlighten you”
Yes, exactly *headdesk*
For my part – and thank you for the post – I wasn’t yet aware of this consensus within the autistic community, with a preference for “autistic person” vs. “person with autism.” (It’s so easy to be well-meaning and ignorant both – I mean, really, the opportunities in life are endless, even for those who are or strive to be conscientious.) I’m quite certain I’ve used person-first language, and it’s not because I need to remind myself, but because I am sensitive to the social stigma and my reflex is that *others* need the reminder of personhood first and foremost. (This is in cases where I’m not aware of a person’s specific preference, and in cases of those not yet diagnosed.) You see the dilemma? It seems like we both want to get to a point where stigma is not an issue but have taken different routes based on different backgrounds. I’m going to need to think more about this – and keep reading your posts and comments. (As a side note, my philosophical orientation is to try to put personhood first in all my dealings, although I’m sure my language reflects inconsistencies based on social conventions.) Another thing I wonder is whether the attitude might be different among those who are autistic but don’t identify as a member of the autistic community; to put it another way, is there a correlation between those who prefer identity-first language and those who identify as part of the community?
I am not sure there is a consensus – the point most people I have read from try to make is “I want to be referred to this way, and that is my decision.”
Something another blogger brought up – if the person is a “person with autism”, does that not imply there is the possibility of the very same person without autism? No. There isn’t, because that person is wired differently. This is separating the person from her or his own brain-wiring, and that is necessary so they are still considered a person?
And that is, what I think, the damaging thought.
Instead of saying “others might need the reminder, so we will use this”, I think our goal should be to make sure no one needs the reminder. Because saying that we will use it because other person might need the reminder at the same time says that the mindset which requires a reminder that an autistic person is still a person is OKAY (or at least not bad enough to actually have to be worked against) and it is most definitely and absolutely NOT.
People are not people with (or even worse: “are experiencing life with”) blackness, or a certain sexual orientation. Someone is maybe a black guy or a bisexual girl. Even if there are some people who would think them less of a person for those attributes, no one would actually think the reminder is necessary – why should it be for us?
That’s a very nice explanation of your thoughts. “A person experiencing life with male gender”. ” A person with Caucasian race”. Worst perhaps is “suffering from female gender”. It doesn’t really work and sounds patronising.
I haven’t thought a lot yet about these terms, but this post and your comment help me see it is important.
Or the dreaded and much parodied “living with autism”. There’s a great Tumblr post that has all sorts of fun suggestions about how hard it is to live with autism, what with having to constantly feed it and take it for walks and not forget to get it the proper vaccinations. 😛
Or how about “an autistic happening to experience life with personhood?” Sadly, that joke is not mine.
Can I get a link to the tumblr post?
If I can find it, I’ll post a link here. Will look tonight!
At this point all I can say is: Thank you for this! Made my day!
🙂
I couldn’t find that post (it sounds funny) but did find loads of deadly serious articles on the subject. I almost wish I hadn’t started looking, this had got right up my nose! There was one article where the author wrote that they had a “child of autism”. What does that even mean?
Isn’t it obvious?
If you don’t make sure the autism you are living with is neutered, you might end up with little autism-children!
I couldn’t find it either, but I did find a funny reference to the alternative to “living with autism” being “being undead with autism” which was well worth the time I spent searching.
That made me giggle. Thanks for looking.
It sounds like ESL to me. But I guess you’d notice if the rest of the post came across as first-language English or not.
At first I read this as ASL and was like “how does she know what ASL sounds like” . . . My brain is an endless source of amusement these days.
Heard with the mind’s ear. 🙂
Synesthaesia. 🙂
Sorry, that should say the author refers to a person who has a child of autism. Not that’s their choice for their own family.
I quite fancy the idea of being ‘a woman with gayness’ – it sounds very skippy and a lot of fun 🙂 I could combine it with Asperger’s and be ‘a woman with gayness and flappiness’!! How fab!
(But seriously, yes its ridiculous)
I just noticed “flappiness” rhymed with “happiness” so now I have to do a happy-flappy-dance!
I don’t think person first does anything to lessen the social stigma of being autistic, as Svenja pointed out. The message that it sends is just stigmatizing in a different way than overtly demeaning language is.
And really autistic people, part of the community or not, are free to identify however they prefer, but it should be their choice. When someone refers to themselves as autistic or someone with a child who prefers identity first language refers to their child as autistic and then another nonautistic person comes along and corrects them, it’s demeaning and unnecessary. And that’s what I was referring to in this post.
Have you seen/heard this happen in face to face interactions? I think you make a good point.
There was a youtube conversation along those lines in the comment of “S#!t ignorant people say to autistics” that happened that way – does that count?
Well, I appreciate both your and Svenja’s comments and can see how there is strength in saying “autistic person.” I think I got the idea that you were referring to a consensus where you say, “Autistic people…” toward the end of your piece, which read as a collective term to me, although I see that you begin the piece with the phrase “Many autistic people.” I agree that people should be able to express a preference and have it respected. Given that it’s unlikely that there *is* absolute consensus among autistic people on this point, it seems impossible not to “get it wrong” at least some of the time and say something that runs counter to someone’s preference. But if “autistic” is the most empowering, anti-stigma thing to say, then that seems the best default choice, at least, until directed otherwise. It must be frustrating to be in the position of needing to educate people on matters so fundamental to one’s identity and orientation toward / comfort in the world. Wait, what am I saying, “must be”? I know it is, since I’m a woman living in a profoundly demoralizing and degrading culture.
I loved this so much I recommended it to the editors of the yeah write weekly writing challenge. I see you have a few visitors from the challenge already.
Oh, wow, thank you! I did see mention of a challenge up there and wasn’t quite sure what it meant.
I have difficulty believing that imposing syntax and grammar upon another is a valid technique for building self esteem. It has been my experience how children are treated has more impact than the words used during any particular interaction. As an example, talking about an autistic person to another person while that autistic person is actually present but without acknowledging them as part of the communication process is very degrading and that humiliation is in no way lessened if the people talking use person first constructs.
Yes. Thank you.
How about if I just call you by name? I see where you are coming from, but I would rather just speak to you instead of at you or about you. This was a thought provoking post.
People who are concerned about what to call other people are doing it to distance themselves from everyone rather than embracing individual differences. I don’t have time for that sort of nonsense.
I see comments like this a lot too and I feel like I’m missing something. An identity is not a substitute for a name. No one calls me “hey autistic” when they want to get my attention. Similarly, if I want to talk about the autistic community, it would be not only impossible but also totally unnecessary to name every single person in the community by name.
There is nothing wrong with the word autistic and it’s a perfectly useful word when identifying a group of people. Not only is it useful, many people consider it a source of pride, culture and community. I need a word to talk about people like me and I’ve chosen to use autistic.
Suggesting that what people call themselves is meaningless or nonsense is also quite offensive. I appreciate that you want to connect with people on a personal level, but the issue is far from that simple.
When I first read the comment I didn’t think it was bad. In fact I thought it was even sensitive and caring. You totally changed that with this piece and I thank you for it. Sometimes being overly politically correct can do more damage than good and I am glad people are seeing that. I’m also disabled — I have Bipolar Disorder and I dream of a day where it doesn’t feel like a dirty little secret.
Thank you for being so open to reconsidering. So often when I write something like this I worry that I’m just preaching to the choir.
I think we should be able to say “I’m disabled” and not feel any sense of shame or like we have to jump to hoops to make it “sound better”.
Whereas *I* sometimes feel like I’m crashing a party and making oafish attempts at conversation.
There is a distinction between people who use “person with X” simply because that is the wording they have become accustomed to, and those who deliberately impose their own principles and values on whoever they are speaking about. When done deliberately with no regard for the preferences of the person involved I must agree that it is demeaning and indicates that the speaker has no regard for the rights of that individual. Imposing person-first terminology against the wishes of the person in question is actively denying their status as a person and entirely contradicts the supposed intent of that word order.
That’s a really good point. I know that person first is drilled into people in academic and professional training settings and so becomes habit for many. It grates on my ears but it’s the common usage and I get that. But people who are hellbent on “educating” autistic people or relatives of autistic people who have stated a preference is just . . . no.
Exactly. It’s saying that the preferences and feelings of the autistic (or disabled, or whatever) person don’t matter: it’s ableist oppression.
I am one of those for whom person first language has become second nature due to my training as a Special Ed teacher who works with Autistic children. I’m still so unsure of what the default should be without prior knowledge of a preference. If a parent or child were to express a preference, I would do my best to remember that preference and abide by it. I can’t promise not to slip once in a while. I do prefer identity first language ( there is a reason I work with these kids, one of which is that I am likely undiagnosed) and believe parents and autistics should be shouting from the rafters about the diagnosis. Every child I have worked with has been amazingly awesome, each in his or her own beautifully unique way. I love Autistic people!
I’ve had the same problem with NT people getting annoyed at the use of the shortened term ‘Aspie’ for the same reasons. We’re happy with it, and it tends to be endearing, not demeaning, so leave it alone. People don’t really seem to understand what discriminating or insulting language actually means at this point, they just jump on anything they don’t consider to be the ‘politically correct’ term.
Dear Sheridan, here is one “NT” (though I’m not fond of *that* term) who *loves* the word “Aspie” exactly for its endearing quality and the fact that it seems to be used so fondly by those to whom it applies.
Yes, I’ve heard aspie slammed by both autistic and nonautistic people for all sorts of reasons. I totally agree with the idea that each person should get to choose the labels they’re comfortable with and not be thought “less autistic” or not politically correct or whatever. *sigh*
I am still at an early stage with all this but very quickly I discovered that I am very much more comfortable with ‘I am an aspie’ than with ‘I have asperger’s’ – the latter statement seems to be about what I am suffering from (like ‘I have the flu’ or ‘I have diabetes’), whereas the first is a statement of identity.
When I get to the point of conversation where we exchange personal information, I use the phrase “I am an Aspie.” It is either met with a knowing response or a question or a blank stare (Remember, half the people in the world have IQs below 100.) If they know what Asperger’s is, then we discuss the incidence of Aspies in Computer Science and Information Systems. If not, I explain what it is. This usually includes my personal belief that Autism is a trial step in evolution. If it gets a blank stare, I say goodbye and look for intelligent life.
This is a great piece. I have a punny thing to add about academics, though: working in the field of education, I saw so much of this [ableist oppression through ‘do-gooder’ ‘expertise’], and then I started doing disability studies outside of education and met a great many academics who did not feel the need to do feats of linguistic jargon to enable themselves to try to remember that I am a person. I was going to come on here and say, maybe they are better at language because they tend to be in the humanities, but then I looked at that word in my head: humanities. Then the pun came to me. Maybe they are just good at figuring out what a human is. Thanks again for this piece and the many other great ones you bring. Love, Ib
My screwed up languaging read that as “puny” the first few times and I was puzzled because what on Earth could Ibby say that anyone would consider puny? 🙂 But yes, perfect pun and I’m so glad you shared it. It’s good to know that there are areas of academia where we get to people without having to remind everyone all the time.
Absolutely. I hate this. I say something because I might need some consideration. It’s sort of like a warning. I may do things that will make the other person confused but not to worry, I’m well aware that I’m doing it. Like stimming. If I were going on a hike, I might let the person know I get nervous about heights. It has nothing to do with me being a person but that if we get high up I might need some help and please don’t ask me to go near the edge of the cliff. Saying you’re autistic might help others to have more patience and understanding of peculiar behavior.
Yes, exactly. 🙂
The first sentence on top of http://www.autism.org.uk ‘We are the leading UK charity for people with autism (including Asperger syndrome) and their families.’ This is apparently the editorial policy of NAS as can be witnessed from a quick search: https://duckduckgo.com/?q=%22person%20with%20autism%22%20site:www.autism.org.uk/
Identity first makes so much more sense when seeing the world as a neurodiverse world.
Odd since they’re the National AUTISTIC Society.
In general the NAS seems better than A$ though I’m not overly familiar with them so someone might tell me otherwise.
It is indeed odd, which is why I pointed it out. My understanding from another list is that this is the entrenched position of NAS but is of course contested. Some persons at NAS respect our individual choices but at the organisation level they have adopted this poor position and stick to it.
On a more personal level. I have given much more thought about how to express my autism since I recently first publicly outed myself in writing. I rushed the writing to be in time for the submission deadline and regret having included a person first description. I had initially written it as an identity first but with the colloquial ‘aspie’ and was suggested to replace it with ‘someone with Asperger’s syndrome’ (by another aspie). I definitely would not write it this way anymore. The reason I rushed it just before the deadline is that it took me a long time to decide to write publicly about being autistic. If you’re interested, the text I’m referring to is the first part of an evidence to the UK’s Home Affairs Committee’s inquiry into Policing and Mental Health available at http://gizmonaut.net/blog/uk/2014/05/hac_policing_and_mental_health.html
Yeah, I don’t have a problem with people who say “person with…” when it flows naturally. It’s the ones who have an agenda. The ones who insist this is the correct usage. It’s like they’re trying a little to hard to convince someone that we’re people too. Who are they really trying to convince, us or themselves?
Yes, exactly my question. Also, people seem to think that jumping through linguistic hoops will make everyone feel less uncomfortable or something. When clearly they’re the ones who are uncomfortable.
I have an Aspie son. Having that ‘label’ is something that he wears with pride because, to him, it explains why the rest of the world thinks in such ‘weird and illogical’ ways while his ways of thinking make perfect sense! But, like signlady said….we often get “rainman” comments and other strange arbitrary assumptions as soon as anyone hears “on the autism spectrum.” Very thought-provoking post around the implications and power of language. Thanks 🙂
This is why it’s so important for kids to have that label and to have it positively framed from an early age. Good for you for giving him that gift!
Amen.
I blogged about this a while back but could never have said it as well as you did!
The more the merrier! We need to keep saying this in a zillion different ways until it sticks. 🙂
For me, I will go with whatever the person wants. If they want ID-first, I’ll use that. If they want person-first, I’ll use that.
B/c a lot of which one a person might pick depends on their situation. A lot of autistic people (me included) pick ID-first in part as a rebellion against groups like Autism Speaks that demand we use person-first even as they do their level best to eradicate us because we’re not fully people to them.
But some people pick person-first because ID-first has been used in the same way.
So I can’t yell at/judge ppl who use person-first. Because odds are their motives are the same as mine, I’ve discovered. Both are acts of disability activism and should be respected. Which is more appropriate depends on the person’s situation. Likewise, I can’t really judge those who have a disability who have an opinion on how others should ID. I’ll listen to their opinion, but because our situations differ, I might not agree. Then again, I’ve met disabled people who try to dictate how other disabled people should ID, erm. Not never, but so vanishingly rare that the three times I have encountered it stand out.
Far more common is abled people who try to dictate to me how I should identify. And those people, I will judge with a vengeance. Because almost always, they don’t have the experience or knowledge to have an opinion. You need either first-hand, lived experience or years of dedicated study to understand the nuance of disability identity politics. Most abled ppl I’ve met who try to expound on their opinion about it to me think that an afternoon on Wikipedia gives them equal footing to my 26 years of chronic illness and developmental disability. And it doesn’t. It’s like when a creationist who stopped science in grade seven tries to debate evolution with an evolutionary biologist. Not even in the same realm of understanding.
And that leaves aside the issue about how nobody gets to dictate to anybody how they should feel and identify w.r.t. their disability(ies).
Yes, I am totally all about people referring to themselves however they like. If a person on the spectrum (which is a term I find myself using more and more to try to be inclusive when generally describing people) has a preference, I’m fine with using that preferred language when referring to them. Identity is really important and, as you said, personal.
Sadly, I’ve seen a fair amount of judging by autistic people of how other autistic people identify themselves. The first few times it happened, it stood out for me, but it’s become something that is just an uncomfortable reality in some spaces that I find myself in. 😦
Thank you. You said it very well and you are right about the reasons that people choose how to refer to themselves – their own experiences. It is a matter of respecting others’ choices.
Reblogged this on Insight Out and commented:
Autistic people, however, have repeatedly expressed a preference for identity first language. For some reason, nonautistic people who think they know better continue to ignore our (loudly and oft-stated) preference. To those people I say, “If you truly believe we’re people, first or otherwise, then listen to what we’re saying and respect our preference.”
Autistic is not a dirty word. When you act like it is, you aren’t helping autistic people. You’re contributing the very stigma that you pretend to abhor.
Or blind, or…, or single, or married…or male, or female, or ???
Thank you for the reblog!
Pleasure
I use “autistic” and “non-autistic.” Never “normal.”
Thanks for this post, Cynthia. You have a gifted knack for “saying out loud” what many of us are thinking. I know that I am autistic, and I can remember my autistic traits from early childhood to the present day. Head banging, spinning, flapping, extreme wandering, perseverations with objects or topics. Was quiet; didn’t speak much, but when I did speak I repeated myself noticeably. Friendless. And so on. Sadly, my “family of origin” does not believe that I am autistic. To them I am a jerk, a smartypants, a weirdo, a misfit, a pretender. I cannot believe that I am the only senior-age person who has this experience. It seems that mental differences are among the last of the targets of bigotry and prejudice. At least in current “modern” times. Sigh…
My sister (age 65) is probably autistic, but she cannot see herself (or me) in that light whatsoever. It would help to explain so many of her great difficulties that she has had in life — and also to explain some of her positive traits. I wish that young parents today could see and understand the stupidity of denying the positive aspects of actually having a diagnosis (of being an autistic child or teenager.) I have lived a long life not knowing that I am autistic. Please, parents, listen to those of us who have lived our lives without knowing who we are.
I hope that with each successive generation we get closer to acceptance as the norm. There are probably quite a few people your age with similar experiences and quite a few like your sister as well. I wish our autistic elders were more visible and recognized.
I have read the post and had a discussion with my husband about all of this. I was surprised by this…I’ll admit and he was as well. He has worked with, as well as known, many autistic adults for years. Our daughter has moderate to severe autism and she has friends of varying ages who have autism or are autistic. I mean no disrespect when saying this, but we are so confused because we have never heard anyone say they dislike hearing “autistic person” vs “a person with autism”. Our daughter knows she is autistic – we speak openly about it (have actually said “you are autistic” as well as “you have autism”) and she knows it’s a part of who she is and she doesn’t think much about it past that. She knows she is absolutely wonderful. She is not ashamed about being autitstic. Our language is always positive. She is happy with who she is – she doesn’t focus on the autism but is happy that’s it’s a part of her. However, we have raised our children to treat everyone equally, respectfully and as all human beings deserve to be treated. In her mind, she is a person first and foremost. Is that wrong? Since yesterday, I’ve done some research online, looking at both sides. Still confused – as I see each side say they are speaking on behalf of the autism community or for people in that community. Yet, of those we know in that community, they don’t seem to care. So why does there have to be such a line drawn? It seems to be more about personal choice, doesn’t it? I have seen some pretty intense and heated comments written about this on both sides…on some of the online research I was doing. I honestly see my daughter as ultimately ending up neutral in all of this as she gets older. She respects everyone’s choices because that’s who she is. Is that wrong? Does the whole autistic community have to ultimately carry one label or the other? Or, is it really an individual preference? Again, I mean no disrespect. I am just trying to determine where my daughter and her friends and their views will fit in all of this?
It is a personal choice and my point here was that if someone expressses their choice, other people should respect that. The comment that sparked this post was by an educator lecturing a parent of a child who prefers identity first language but I’ve seen more instances than I can count of people doing the same to autistic adults and it gets tiresome to constantly have to defend how one refers to oneself. This isn’t about sides or majorities, it’s about people having their stated preference respected, whatever that preference might be.
This is superbly written and provides an excellent forum for working through this often-heated issue. People-first language was created to do much of what is outlined here. With Down syndrome, the first thing most people see is the DS, and it has been perceived negatively for decades–to the point that babies were taken from families and institutionalized before they even had a chance to develop an identity. The modern-approach is to abort, again before the identity is developed. The luxury of being Neuro-Typical is being seen as a unique individual by default, and that is what person-first language tries to provide for all–first an individual. The DS community is coming off of decades of having DS be an identity, and it resulted in years of justified prejudice. I think that makes it hard for those of us who watch that happen daily to understand wanting an identity to be based on a diagnosis. It is way easier to de-humanize if you label and segregate people as different or less. I have had people come up to me in tears because they aborted their Down syndrome baby and now see a child with Down syndrome and had no idea their life could be like that. So that is the risk of society not seeing the person first.
I’m familiar with the origin of person first and its use in the DS community but thank you for explaining this for those who might not know the history. You summed it up better than i could have for sure. We had a discussion about the differences between the DS and autistic communities on a post similar to this and I learned a lot. I think that the autistic community is similar to the Deaf community in viewing being autistic as not just an identity but also a culture.
One thing I’d like to clarify – I’m not autistic because of a diagnosis, I’m autistic because my brain is neurologically different. Being autistic shapes the way I see and experience the world and that makes it a fundamental part of who I am. I’m different and I don’t want to hide that. And I don’t think I should feel like I have to.
Re your comment about diagnosis. While this is of course obvious, I find the diagnosis having been really important in gaining confidence and in finding out how to express my autistic identity. Before the dx, I had self-diagnosed but knowing that self-diagnosis in general are very unreliable I felt a bit of a fraud. The dx gave me confidence, but I then initially started expressing my autistic identity in terms of the dx itself. It’s reading sites such as your excellent blog and having now started writing (poorly in some respect) about being autistic that I gave much more thoughts about how to express it. I’m in full agreement with your original blog post, but it has been a journey to reach that stage.
Good point. Some of us (myself included) need the official diagnosis to feel totally comfortable identifying as autistic. Others don’t, and that’s fine too, and everyone comes to it in their own way and it’s definitely a bumpy nonlinear journey.
I just wanted to clarify that it isn’t diagnosis alone that makes us autistic.
I was observationally diagnosed by friends, who’d known me for ten years, back in the late 80’s and early 90’s. After my own research into their observations, I saw truth in the discovery they made. I, finally, felt (as you did) a proper diagnosis was in order to officially confirm what family, friends and myself came to know organically. It was a relief to get the official DX and my confidence boosted. I had a better intellectual grasp of my thinking process simply by going through the DX process. I learned a ton about my brains strengths and weaknesses which allows me to positively navigate our, often, complex and broken society. I’m happier knowing what I know, now. It turned out to be the most powerful and empowering discovery in my life.
I’m glad I read this. I copyedited a paper on autism not long ago, and wondered about the distinction. I was trying to cut the word count, but knew that this was a professional term that couldn’t be rewritten. I’m glad to see the reasons why.
Reblogged this on Tell It Once And For Autism.
Reblogged this on Merely Quirky and commented:
My issue with person-first isn’t so much the condescending attitude but that it doesn’t really work comfortably in the English language because we put adjectives ahead of nouns as a matter of course. “The blue book” still is describing a book, not describing blueness. Another blogger recently posted about the privilege of telling another person how to describe/ introduce themselves (sorry, blanking on who, will look up later) but Labeling Theory has it’s roots in language as much as Sociology.
You’re right. No one would say the book with blueness . . . the book experiencing blueness or any other sort of odd construction. This is such a complex topic and I like how many different angles people come at it from. I figure the more ways we talk about it, the more likely one of those ways will resonate with someone who previously didn’t see the importance of it.
My signature on a few websites is “An Autistic mom of 2” and I have had many people focus in on that and say what they feel or want or know blah blah. I am not ashamed to be autistic and believe it or not, it DOES define me as a person. If I was not autistic then I would not be the same person. I struggle and its hard, but I know I am a person. I agree what you say. Well written as always!
Yes, the whole “autism doesn’t define you” is just silly and diminishes the importance of identity. It also ignores the truth. Autism affects how I experience the world in so many ways and I have no problem with that at all. It makes me who I am and who I am is awesome. Life is hard at times, but I’m still awesome. 😀
Very awesome – and modest too 😉
I see my identity as being from a multitude of parts – I’m an Aspie, I’m gay, I’m self-employed, I’m an accountant (tend not to mention that one – oh the stigma!), I’m a dog and cat owner, an avid reader, and so on. All of those parts make me what I am and to be honest I wouldn’t change any of them, even if it made life a bit easier (well maybe I’d swap accountant for author). I’m happy with who I am and the being that is ‘Liz’ can’t be summed up in just one label (since awesome has been taken!) for all the time. Yes I can be one thing at different times depending on what I want to focus on (or what I want others to focus on) but it is only a viewpoint and not me as a whole. My Asperger’s impacts on how I’m an accountant, and the cat wanting to sit on my knee stops my reading! It’s all interlinked and interwoven
I’m not sure if this is remotely relevant actually, but that rarely stops me 🙂
😀 I have a lot of years of not feeling terribly awesome to make up for.
I totally agree. Being autistic is an inseparable part of me, just like being a woman and being 5’4″ and being a runner and a writer and a mom. You make a great point – I think people often do mistake accepting the autistic label for saying that autistic is the only label or it’s the sum total of who we are. It’s become such an intrinsic part of who I am that I forget how startling or uncomfortable it can be to others.
Only vaguely related, but this reminds of a post I saw on Tumblr, where some well-meaning person had written out a bunch of ‘disorders’ such as OCD or depression, and written with them ‘This is a disease, I do not choose to have this’. I think the point of their post was that they were trying to say that people with mental health issues can’t always stop something such as depression so easily. The thing REALLY got me angry about this post though, was that Aspergers syndrome was listed as one of these things, as a ‘disease’!! It was crazy, this post was being reblogged and martyred for being so wonderful and understanding of mental health, but they had chosen to say that Autism was a bad thing and not just a different way of thinking! I just dont get why people cant see that the unhappiness that arises from being autistic isnt from being yourself, but from others not accommodating you to being yourself. Apologies, that was a bit of a rant!
Ack. I get the point they were trying to make but people need to educate themselves before attempting advocacy or to educate others. Also, I think it’s important that we not throw people with mental health issues under the bus by doing the “aspergers/autism shouldn’t be lumped in with mental illness because mental illness is bad and autism isn’t” thing. I know that’s not where you were going but it’s something that I’m increasingly trying to be mindful of and so I’m throwing it out there in response to your comment. Mental illnesses are different from autism and that’s important for people to know, but I wish the concept was generally talked about in a less judgmental way. And now I think I went on a rant . . .
Ohhh my. I’m glad that you brought up the topic of mental illness. I agree that there is negative stigma attached to “mental illness.” Someone very close to me has the double whammy of being on the autism spectrum (first diagnosis) AND later having what appeared to be psychotic episodes which earned the label, schizophrenia. Weeks spent in psychiatric wards with double-lock doors and 24-hour watches from staff and cameras. Four different hospitals in the past 6 years. Not fun. He has a tendency to get into a catatonic state which in Britain is more associated with autism than with schizophrenia. We live in the U.S. where profit gets top attention over science. I’ve gone around and around in circles (in my research) trying to understand “what is schizophrenia and what is autism?” I still don’t know the difference, but I’m working from a carefully developed perspective that schizophrenia may be autism spectrum under stress and strain. Since we have eliminated most of the stress that he had felt he has not wanted to be hospitalized for 2 years.
You may be asking, “What? You can’t tell the difference between a mental illness like that scary schizophrenia and the condition of autism?” Well, no, I can’t. Ignore the sensational headlines and read the diagnostic manuals from several different decades. You’ll see what I mean. Labels, descriptions, language and diagnostic tools change. What is now called autism was once known as childhood schizophrenia. Yes. Read the history. It is baffling , it is unfair (to be labeled by powerful authorities who may not actually know what they are doing, and we are made to feel powerless from the negative tides of public opinion and prejudice.. Soooo…. ranting aside — Mental illness and autism — it’s a huge topic.
To add to the confusion, geneticists are now beginning to notice that schizophrenia and autism share many genetic and epigenetic markers. More and more, it looks like we are at least cousins, if not, as you are suspecting, different manifestations of the same condition. One part of the mystery that has been fascinating me recently is that when families have an Autistic child, they often have more than one. But it is very rare for a family to have more than one schizophrenic child. There is clearly a strong genetic component to schizophrenia, as well as autism, so why is there rarely “room” for more than one schizophrenic child in a group of siblings? I will be thinking now about your idea of schizophrenia as autism under extreme stress when I ponder these ideas.
Your idea also shines some light on John Nash, Jr. And his son, John, both of whom are schizophrenic in addition to being brilliant mathematicians. They both go in and out of active schizophrenia and both are professors when they are not actively hallucinating. I was watching an interview, and John, III said that when his schizophrenia is active, he can’t do math, not even to add a simple column of numbers, but when it is not active, he scored an 800 on the math section of the SAT. The high level of mathematical ability the Nashes present is something seen in many (not all) Autistic people and a skill can vanish when under high stress.
You have given me new things to think about with respect to autism and schizophrenia. Thank you.
I tend to feel that most if not all states of mental health and ability (it strikes me that we need to find a better term than “mental illness” if we want to eliminate stigma) are on a continuum, and while protective factors may prevent some people from struggling much in their lives or neural functioning, the brain is organic, susceptible, and (if supported) resilient – and intimately connected with the digestive system. I have experienced a range of challenges in my life, some extreme, none diagnosed, and have been on a totally natural healing path (dietary change, traditional medicine, homeopathy, and spore-based probiotics) to shore up my various systems. The improvements have been marked, and I feel I’m a much stronger person than I used to be. I would say both that I know myself much better now (despite the intensity of my inward orientation in years past, which felt like self-knowledge) and that my identity feels less “defined” than it did when I was having my worst problems and was much less content in my life. When someone blamed or condemned me for, as one example, my hypersensitivity, it felt unfair, and I was preoccupied with the unfairness. I needed – as everyone does – acceptance for exactly who I was, for my right to have the feelings I had, for the *logic* of those feelings within the context of my life, and for the strengths I manifested at those times. All of that said, I’m glad I have developed greater resilience (without pharmaceuticals in my case, which I’m certain, given my reactions even to caffeine, sugar, and alcohol, would have messed me up in countless ways) and feel I’ve not lost the strengths of my hypersensitivity, while no longer being wholly at its mercy and dictates. I never knew how good it could feel to be me, or what it would be like to relate to others with greater comfort. Returning to the subject of autism, I love the autistic kids with whom I’ve worked. I love their autistic traits, as very much a part of who they are. I feel surprise, discovery, and delight when interacting with them. Yet when I see them having what look like better and worse days, my instinct is that more better days would be preferable, and I long to be in a position to suggest to them and/or their parents the kinds of natural experiments I’ve undertaken myself, such that they might grow and discover what feels good and right to them.
I’ve been wanting to put this into words for a long time, and I hope I’ve managed.
Ah yeah, I see how I may have mis-worded that! When I said mental health was ‘bad’, I meant that it is not nice to suffer from, rather then people with mental health issues are bad/should be judged or not free to be who they are! I have struggled with OCD, paranoia, anxiety and depression all my life, and my Mum is a psychotherapist, so I’m quite the opposite to judging people negatively on mental health! It’s a topic that we should be mindful of though, definitely- I’m a little surprised by how many people are scared of those suffering from mental illness, whilst I’ve grown up being taught that it can happen to anyone, and you simply treat everyone with compassion.
I assumed that’s where you were going, yes, but wanted to clarify as this can sometimes be an issue. Your approach sounds just right!
I just had this thought that when one uses the term With autism it implies that you can get rid of it if you do enough research. It is not my intention to step on toes or to stir up trouble by making this observation. But there is profit and money in the field of “persons With autism.” It sounds cynical, but it does seem more financially profitable to keep using the term With autism. I am interested in the influence that the application of carefully crafted language and semantics has on the behaviors (and beliefs) of people. Advertisers know this , and more skillfully, so do political groups who wish to make persuasive points. And, of course, profitable charities know about crafted language, too. The rest of us may go on parroting that language without giving it deeper thought. Or, we may believe that that language “doesn’t influence me” __ when in fact it does, especially if it is repeated a lot. Just that one small word “With” implies more than what we may be willing to give credit to.
And so, besides the awkwardness in the terminology, I really don’t like the idea that my thoughts and behaviors are being manipulated by (sometimes) well-meaning people and/or charities — who talk about me without me.
This is all so true and I’m glad you added it here. The same is true of making autism into a big scary horrible thing–fear is a big profit driver. Acceptance is free (though not necessarily easy) and that’s likely one of the reasons it hasn’t been embraced by organizations that need to raise money or sell services to parents of autistic kids (and adults, in some cases).
The argument that a disability “doesn’t define you” never made sense on a fundamental level, even if you’re not talking about autism specifically. If I say that I as a light-skinned person have to wear a lot of sunblock to avoid burns, have I somehow implied that my light skin is my only defining characteristic, or is it merely the focus of this one sentence?
I am over whelmed by the amount of information in the post and in the comments. The bottom line for me is that many well-meaning people use what someone else would consider unbearably rude. Therefore, I’ll just assume that no harm is intended.
As for how I refer to my self…
I am autistic. It is part of who I am. It enhances my life.
I have a headache. It is with me at this point time, but it will go away.
Depression has hold of me and won’t let go. It affects my life for the worse. It is deadly and I DO NOT WANT IT. If some one asks me, “How’s your depression doing?” I tell that the depression is not mine. I never asked for it and I refuse to take ownership of it.
I experience depression more sever than other people do. My version of autism is mild. I feel that depression is a disability while my autism manageable. What if someone experience depression as minor and autism as extremely traumatic? Would they refuse the autistic label but accept depressed (aka moody)?
Hi!
A couple of things 🙂
First, I love this, and would love to reblog it, if it is okay with you. That’s going to seem funny, since I’m going to follow this thought with my second thing —
I’m so confused.
The terminology has me a bit confused. My son was diagnosed in Jan 2014, so I’m relatively new to this community, but already very passionate about it. I have, like so many others, joined the blogosphere and have been writing about my adventures with Autism. I’ve gone through a lot, but learned so very much more. I have still so very much to learn, but I want to represent the actual autistic community — not the autistic parenting community. It’s becoming crazy apparent to me that the viewpoints and perspectives are VERY different between the two.
So, could you do me the biggest favor in the world? Could you explain the terminology to me “Person-first” versus “Identity-first?” Like, I guess I’m a bit confused how “Autistic person” is better than “Person with Autism”? It seems like it’s the same thing, but perhaps I am not understanding. Whatever the case, whatever is “right” according to the autistic community is what I want to start doing — however, the whole thing seems a bit like splitting hairs to me (probably because I don’t understand why one is offensive, and the other is not). Please know that I’m dead serious here and I truly, truly, truly just want to know.
I am a cancer patient — or a person with cancer. I have never really thought about how I define that. I DO get irritated when people refer to me as a warrior or survivor — I don’t view myself as any stronger than any other member of any alive species that wishes to simply, remain alive. That doesn’t make me warrior or “superhero.” It makes me a *mammal* lol. I don’t know, perhaps this is the same thing. **I’m chewing this over, trying to figure it out.**
Also, is this a really big deal? Like, if so, should I go back through my old posts and switch around the wording? Or just fix it from this point forward (this is where I want to reblog your post, I am sure that other parents would find this equally interesting).
Also, I saw some of the commenters refer to “clinical practice” versus “personal practice.” How does that come into play?
Thank you so much for this. I know I’ve asked a lot and I’m sure you are really busy. I’m just really confused, and, well, really overwhelmed. Suddenly I feel like I still know nothing!
Still grateful for this post as you’ve made me think……. a lot…..
Sincerely, Rachele
Many autistic people have written about this, so rather than repeating what they said more eloquently, I’ll leave some links here for you and anyone else who like some background reading:
Jim Sinclair’s classic post: http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/
Lydia Brown’s post at ASAN: http://autisticadvocacy.org/identity-first-language/ (scroll to the bottom for links to a lot more posts on this subject)
An article by Jean Winegardner that is very accessible for anyone new to the topic: http://communities.washingtontimes.com/neighborhood/autism-unexpected/2010/aug/2/autistic-or-person-autism/
Mike Monje’s take on the subject: http://www.mmonjejr.com/2012/12/person-first-language-doesnt-put-people.html
Amy Sequenzia’s thoughts: http://autismwomensnetwork.org/i-am-autistic/
Thanks so very much!
May I add this link to a website I’m building? It’s a doorway to autistic bloggers/perspectives for parents/family, etc. of people on the spectrum. It’s not published yet, but I’d like to include this in the “thought provoking” section. Thanks!
Of course!
YAY – if you have any thoughs about issues you’d like parents to know about or help them with, or things you WISH they’d ask you about, please feel free to email them to autistikids@gmail.com.
Good post and lots of good comments. So many things I’ve never thought of before and the way words can be understood. Maybe it’s because I have one parent who is fluent in a language where it is commonplace to put the noun first and then the adjective (example: car red) and this carries over in his English speech habits frequently. I’m rather accustomed to accept either the saying of “red car” or “car red” without thought so this whole discussion has been very thought provoking for me. Mostly because when you break it down it becomes hard for me to differentiate which word “autistic/autism” or “child/person” is the actual noun and the actual adjective regarding what is actually meant. I’d not given this much thought. To me the meaning was always there regardless; only depending on the person they will color the shape of those words differently. Thanks everyone for engaging my mind!
To those who think I should always use person-’first’ language about myself: do you seriously expect me to say that I am a person with maleness, gayness, and Autism? Why can’t I call myself a gay Autistic man since that’s what I prefer?
I have a totally off topic request…sometime after you are all settled would you consider doing a poll on Autism/Aspies and travel? I am wondering if travelling is hard for all Aspies as they age or if it is just me? In my teens I was pretty resilient…I didn’t love travel but it was ok and most times I did not end up sick from sensory overload and exhaustion and change, in my twenties I was ok too but did most of it at great cost to myself with needed time to recover from my “vacation.” and now in my thirties I am finding that day trips are the only thing I can handle. I like my home at night and my own environment. I prefer to be as close to it as possible…and I get sick or upset if I stay away…my tolerance is two days from home max and two weeks to recover…Does anyone else feel this way? Does it get worse with age or in certain decades?
My therapist assures me that it is just fine and beautiful to live my life my way…that we were not meant to travel as much as our culture promotes anyway and that I am intellectual enough to experience the growth of another culture through books, people and my great empathy and understanding…so I feel less guilty about it but I am curious of how much of it is personality or autism?
I don’t know if it’s personality or Asperger’s but I’m the same so I’d be interested to see this topic discussed in the future. I’m early 40s and have definitely got a lot more introverted as I’ve got older, and much less keen on travelling. I’d much rather be at home reading about other places than visiting them though managed holidays much easier (though still stressful to extent) when in my 20s. Home is definitely where my heart is!
I really appreciate your comments and thoughts. I’ve been reading many posts on this topic and am still struggling with which way is more correct or more respectful in our lives (my family). You see I don’t refer to my children as my typical daughter and my autistic son, they are my daughter and my son. He is autistic and she has some processing challenges. Our toddler is our youngest. Although autism and LD are an intrinsic part of them, to me it is far more important to say that they are our son and daughter. (and yes I realize that I said “to me” –hence my struggle) I could also say my blond daughter, or my blue-eyed son but just as their differences don’t define them neither does their physical appearance. Yet I don’t want to deny or hide a part of them that is them. I have started using the term is Autistic instead of has Autism as that seems more appropriate now as I learn more, but honestly saying my autistic son makes me uncomfortable (yes again I realize that it is “me” again, but why do I need to announce that to strangers when it won’t make a difference in either their or our lives?) I don’t know if my perspective makes any sense, I don’t know if I’m right or wrong or somewhere in the middle. What I do know is that posts like yours have made me think twice about people first language and why we use it.
Why would you announce to strangers that your son is autistic or blue-eyed or anything else that specific and irrelevant to them? That doesn’t make any sense to me.
The use of identifying language is meant for situations in which the identifying characteristic is germane. I certainly don’t go around announcing to everyone that I meet that I’m autistic or green-eyed or a woman, etc. But there are times when I need to share information about my diagnosis (doctors, asking for accommodations, explaining an atypical need, talking about my work) and then I do, I choose to say that I’m autistic. It’s not a complicated thing, really.
I understand that nonautistic people can be uncomfortable with the term autistic because it’s fraught with stigma, but using it in positive reaffirming ways can contribute to lessening that stigma.
I guess if you had 2 sons, one of whom was autistic and one who wasn’t , then you might refer to your ‘autistic son’ to specify which one you meant. Though while typing that I’m thinking actually you’d probably just refer to them by name. Although, if the person you were referring to knew you had two sons, knew their names and knew one was autistic and the other not but wasn’t sure which was which then you might say ‘A, my autistic son’ or ‘B, my NT son’…
Not sure if that offering enriches anyone’s life but I’m obviously easily distracted by emails right now 🙂
Liz — thank you for your perspective… this is why I ask. I want to use language that will not offend or exclude, but in context I think different ways may work (please see my other response)
And I try not to use the NT any more than I do Autistic, which is to say only in certain circumstances, otherwise it’s my eldest son and my daughter (if that makes sense)
But this is exactly where some of my issues with the language happen. You see when I’m blogging about my family I am talking to strangers. And it’s not their business. Unless perhaps I am talking about autism or school supports (lack of them) or something else directly related. Yet I don’t want these people to assume that my son IS autism. I think in that context it comes back to the awareness vs acceptance/inclusion discussion. A passing awareness does not mean that you have any real knowledge of or motivation for acceptance. In that context I do not like using anything other than person first language. In the context of acceptance, then if it seems appropriate for the conversation/discussion then autism-first may work.
When I am talking about it in terms of diagnosis, supports and challenges I do not hesitate or back away from autism-first language at all as it feels appropriate in that context.
My son is autistic AND he is so much more. He is funny, intelligent, a deep thinker, a mini-me (who is now taller than me) and a huge part of our family.
I wonder sometimes if the issue comes from anyone assuming that they can understand any other human’s perspective and existence. I could never presume to understand his, or yours or my husband’s, just as none of you could understand mine. We can empathize, but each of us is unique and no matter what our similarities or differences are we simply cannot understand each other.
So if I’m reading your use of language rules correctly, you use person first when you want people (i.e. strangers, blog readers, etc.) to view your son positively and identity first when you talk about the help that he needs and the challenges he faces? That’s a really interesting distinction. You’re right, I find it very difficult to understand you and I can see why you cannot understand my perspective.
please, I am merely human and trying to do something right. For me nothing is a hard and fast rule. I was merely trying to explain circumstances, yet no matter how I do that you seem upset with me. I am trying to create a dialogue and to learn. I thought that your blog post was inviting that.
It’s not about people viewing my son positively or negatively, it’s about what is their business or not. And about how people who do not understand autism chose to perceive when they hear a diagnosis before a name.
And as a parent, I will always want people to see all of my children in the best possible light. That doesn’t mean that we shrink away from or ignore challenges or differences, just that we don’t always need to make every moment about them. Sometimes a family is just a family.
I took your post to mean that for you, although autism may be an important part of how your son manifests himself in the world (and not a part of him that you’re ashamed of), it’s also not the only thing you see or know in him. That loving him means loving him, and autism is a part of that but not all of that, for you. That person-first language more truly reflects your experience of loving him as your child, as you love your other children, so person-first comes more naturally in certain situations. Am I on the right track? Whereas from another perspective, autism is not a “part” of being a person, and so divisions feel antithetical and problematic.
Yes! That was a great way to put it. Thank you!
Which then brings us back to the original point of person-first language being appropriate–which I think it can be depending on the circumstance and the people involved.
Thank you
I’m not upset. This has actually been a great illustration of what the original post is about.
Great post, thanks!
I fail to see why it’s okay to use the identity first descriptor “typically developing child”, but not the identity first “autistic child”.
It’s not. In fact, you should use the term “child with typical development” in theses. ;D
I think there’s a fundamental difference between autistic people and people with most other “disabilities.” Autism is one of the few that is generally invisible. It’s also one of the few that has such a profound lifelong effect on thinking and identity.
People with other disabilities often feel that people see the disability so much that they are ignored. In that sense they want to be seen as “normal.”
Most autistic people, particularly those of us who grew up not realizing what was going on, have spent years trying to pretend we’re what other people see (at least before they get annoyed). We’re tired of trying to be “normal” without any recognition that something very different is going on in our cognition. Separating the autism from us seems disingenuous and at the very core of the problem. I.e. That’s what we did BEFORE we knew why we were different. Knowing gives us something to claim, something to explain why we are the way we are.
For another example, although we may travel the world and try to blend in everywhere, few people would be satisfied to sacrifice the identity allowed by their nationality. Most would be uncomfortable with consistently being referred to as a “person from France” for example, rather than a “French person.” The first gives a subtle impression that the Frenchness could be given up and doesn’t have much of an effect.