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When talking about my son, I will variously refer to him as “autistic” or that he is a child “with autism.” My choice at any point in time depends on what makes the sentence flow better, and provides the clearest meaning. However, for a significant number of people, their choice between the terms reflects what they think of as a more enlightened perspective and awareness of autism, than people who choose the other option. But which one is “more enlightened”, and why? It’s not nearly as straightforward as some claim.
Such terminology choices supposedly reflect attitudes and beliefs about autism. Specifically: whether autism is one trait of many in an individual, or central to their identity; whether its existence is permanent or transitory; and whether autism is something horrible or beautiful. Furthermore, is the relevant attitude towards autism that is supposedly reflected in the chosen words, a reflection of the views of the person using the word, or a reflection of society’s attitudes towards autism as appreciated by the person using the word?
Frankly, you’re going to be damned no matter which term you choose, and I’m far more interested in the substance of what someone says rather than getting hooked up on whether they used “autistic” or “has autism”. But I do think it’s worth explaining the depth of confusion and contradiction involved in claims that choosing one type of terminology over another reveals something vital about your attitude towards autism.
I’m going to begin with the attitude that autism is just a trait of a person, rather than the whole identity of the person. Usually, those holding this view will argue for the use of the terminology , “has/with autism” rather than “autistic.” But is the trait a changeable one, or an inherent one? Is it something that can be altered with time (eg, is autism curable), or is it more like eye colour (you can make it look different externally but it is always there underneath)? If it’s the former, you’re more likely to use “has autism”, if it’s the latter, you’re more likely to say “is autistic” despite the fact that it is just a trait. So already we see that the idea of autism being a trait rather than central to identity, isn’t a clear-cut answer to chosen terminology. But it gets worse.
Let’s accept that it is either transitory or permanent, but definitely a trait (rather than central to the person); that still won’t mean one type of phrase is more accurate or enlightened than the other. For example, let’s say my eyes are blue. You could say I have blue eyes or I am blue-eyed. Both is OK, though the former does perhaps feel more natural. But if you use the latter, you have not denied it is merely a trait, and made the error of equating my entire being with the trait (as many claim re using the word “autistic”), you are just making an observation about something I have. That hardly makes the person who calls someone else “blue-eyed”, cruel by equating my whole being with my blue-eyedness.
Even if we accept that autism is just a trait, and it is important to not equate the whole person with the trait by referring to them as “autistic” (which I have already pointed out, isn’t a particularly strong argument), the moral relevance of that equating it with identity, depends on your view of whether autism is a good thing or a bad thing. If the “trait” of autism is seen as a negative thing, then you are far more likely to want to distance it from the person; it is just something they have, not something they are. Whereby using the terminology “has autism” might make more sense. But if the owning of the autism trait, is seen as a trait, but a positive one, you are more likely to have no compunctions about the phrase, “is autistic”, since it’s not going to demean or mark out the person in some cruel way.
But who’s 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 society’s attitude does suck monkey balls, and 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.
The strongest position for consistently using “has autism” then, is reflected by the view that (a) autism is at least potentially transitory, rather than a permanent aspect of the person, (b) autism is a trait rather than a larger aspect of identity, and (c) it is a negative trait. As soon as you start to vary from those three parts, the argument for preferential use of “has autism” weakens even further (and it was pretty weak to begin with). Basically, the analogy of some unpleasant disease would be the strongest comparison. In the same way that you wouldn’t call some one “cancerian” (unless you were referring to their star-sign), you would say they “have cancer.”
What then, are the active (rather than re-active) claims for using the term “autistic”, and do these arguments fare any better in their persuasive force?
“Autistic”, like “Jewish” or “African” can be used as a partial descriptor of identity. Except, autism is more than “one of many” aspects of someone’s identity. Whether autism is transitory (potentially curable) or permanent, it affects so much of how the individuals observes, understands, and operates within the world, that referring to someone as “autistic” tells you a lot about them. Most people who actively adopt the word “autistic” in preference to “has autism”, see autism as something inherent to the person; that even if the symptoms of autism can be covered up with enough behavioural training and will-power, that autism still permeates the thought-processes of the person so that they remain “autistic” (even though autism is identified by its symptoms).
Many people who choose to use the word “autistic” also adopt it as a power-term; signifying pride and belonging. Considering the largely negative opinions of society (at least historically) towards autism, this might be seen as a movement to own and redefine a label in a positive way “yes, my son / I am autistic, you got a problem with that?”. Alternately, it can just be seen as an acceptance of a truth about one-self at a more observational (less emotive) level: “I am autistic” much like “I am female.” Usually it’s a mix of the two: A sort of acceptance of an observational truth.
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. And now we’re back to the negative view of autism, and whose negative view is relevant (society’s or the individual speaking) and how that attitude can be changed (by proudly adopting the terminology, or by fighting it by showing the person behind the label).
It would seem that the strongest position for using the word “autistic” to define a person in preference to “has autism” is (a) when autism is seen as a permanent aspect of a person, (b) that is central to their identity rather than a trait (for example), and (c) autism is seen as having positive connotations. As soon as you soften any of these three notions, you’ll strengthen the pull of the alternate phrase, “has autism.”
Frankly though, a preference for the use of either “has autism” or “is autistic” isn’t strong either way. And the presumptions people place on others about their beliefs, for using one term rather than the other, are usually poorly or inadequately thought-out (or at least, poorly or inadequately expressed). At the very least, attacking some poor soul for not using what you think is the “right” terminology, is not wise. Better to always read what they have to say; look at their content rather than their turn of phrase. Particularly if their message contradicts your assumptions about the beliefs expressed in the chosen phrase.
Like I said at the start, I prefer to pick and choose the terminology as suits my writing style at the time. Sometimes “has autism” is cumbersome and drags out a sentence. Sometimes “autistic” doesn’t provide the right emphasis or deliver the right punch. Hell, sometimes I choose which one I want purely cause it sounds great: “The awesome artistic autistic” sounds better than “the awesome artistic person with autism.” Or “The child with a beautiful mind, a soaring soul, and autism” delivers a different feel and focus than “the autistic child with a beautiful mind and a soaring soul.” Sometimes the message you are trying to get across with your writing is held back by being forced to choose a particular phraseology.
There are times when there are objective and convincing arguments for the choice of one phrase over another, but in my own musings and experience, I do not think choosing between “autistic” and “has autism” is one of those cases. (I encourage you to attempt to convince me otherwise though.)
Autism & Oughtisms 
My own husband and I disagree on this, so I don’t expect to change your mind. I recently completed parent mentor training and this topic was addressed. We were told that when speaking to other parents we should always use person first language. There was some info in the materials they handed out, I can look it up if you are interested.
I had this opinion before I took the training. I think it is important to use person first language to describe people with autism and other disabilities. Even if autism is a life long condition that significantly impacts an individual’s life, that individual is more than just the disability.
I also don’t think that terms used as a disability diagnosis should be used as an adjective. I can see my daughter’s peers in the near future saying to each other as an insult – you are so developmentally delayed, and the come back will be yeah well you’re autistic. Kids and adults are going to throw words around, and each instance is not the end of the world. But we can give an examples of how to talk about people with autism and other disabilities with respect. When people use the word autistic it seems to me, based on my personal opinions, that they do not understand this.
Part of why people are going to disagree with what you’ve just stated there, is the assumption that (a) autism is inherently a disability, and (b) that it is a bad thing. Your examples of abuse of the terminology supports both those assumptions. I’m not saying it’s not a disability, and that it’s not a bad thing (I’ll put that argument aside), but you need to understand that people choosing to use “autistic” don’t necessarily share your perception of autism (and specifically, that they have a more positive view of autism).
Also, as I pointed out in the piece, using “autistic” doesn’t mean the person isn’t being put first, anymore than using “Jewish”, “African” etc means you’ve forgotten the person either. First and foremost, you must look at the context of the statement; for example, if you are talking about the challenges someone is facing during a discussion about disability, there is no reason to make everyone say “person with autism” each time instead of “autistic”. It’s hard to imagine the situation you’re treating as the norm in your comment: That people go around referring to people as “autistic” as a constant attached describer. Even if they were doing such a thing, saying “person with autism” is just as irritating and irrelevant; it’s the (arguable) irrelevance to context that you’re complaining about there, regardless of the terminology used.
Trying to change terminology because of worries about abuse of language, is fighting a losing battle; people will always find a way to tease each other no matter what words they use, and other than the nasty intent behind the way you suggested people might use the word, the word “autistic” is not itself nasty. So what you’re really worried about there is the intent of the person using the word and the way in which an otherwise harmless word is being used. If you want to stop that intent, you need to raise awareness, acceptance, understanding, etc, otherwise just changing the word itself achieves nothing. (Like the campaign to stop the abusive use of the word “retard”; the core problem is not the word in and of itself, it’s the way people use it to imply worthlessness and stupidity.)
So no, you haven’t changed my mind, but I do appreciate the opportunity to expand on the points in my post.
Thanks for your comment.
I just wanted to add that that while I agree with it, the idea of first person language is not mine. You’ll need to download the pdf, but these are the specifics: http://www2.ku.edu/~lsi/news/featured/guidelines.shtml
Since you feel so strongly, maybe you should write this organization a letter.
Hi mamafog,
I was already aware of “person first” language, I did quite a bit of reading prior to writing my post, and came across it a lot. It’s not that I feel strongly about being anti person-first language, I just think the arguments for or against a specific choice (“autistic” or “has autism”) are not convincing. Much of the literature doesn’t bother with an in-depth analysis of comparative language, competing presumptions, or hidden attitudes (and the issue of whose attitude to relevant). It’s not something worth “writing letters” about, but it is something worth bringing to people’s attention (which was the point of my blog post).
I have autism and i honestly don’t care and feel its a waste of time not trying to hurt our feelings (but keep in mind most people cant tell i have aspergers)
Re:
“when speaking to other parents we should always use person first language.”
Some mothers and fathers are themselves autistic. At least some autistic parents oppose “person-first.” (One of my best friends an autistic mom who rejects “person-first” talk. about herself or her autistic child.)
When you know that a grown man or woman (maybe a parent) is autistic and disapproves the phrases that you were told to use instead, would you still “always” use those phrases with this parent? If so, why?
Even if autism is a life long condition that significantly impacts an individual’s life, that individual is more than just the disability.
You’re so right, mamfog. In fact, since I am so much more than the parts of my whole, perhaps you shouldn’t refer to me as a man any longer and instead use the term ‘person with maleness’. [Final sentence has been edited out because it was unnecessarily rude, and by removing it I haven’t otherwise changed commenter’s point.]
Recognise the ridiculousness of your position yet, mamafog?
Sheogorath, you need to understand that you are responding to a comment that is over three years old. The chances that the person you are responding to is still receiving notifications – if they ever even chose to receive them in the first place – is pretty low. They may not even remember the post’s content or their own comment, or just as likely may have changed their stance since they commented. It is generally a poor idea to attack someone’s comment made so very long ago. If you want to comment on the post itself, you can legitimately expect me to remember the core content of all my posts, but attacking very old comments is not a great idea.
Long before I had children, I was scolded by a fellow teacher for referring to a student with autism as “autistic”. I had no idea it was considered bad, and I was so embarrassed about it I never used the word again. Flash forward a few years, and now I have a child with autism. I am still gun-shy about the word autistic because of my previous experience with being reprimanded, so I have never used the word when referring to my son. However other people, including my husband, occasionally use the word autistic and I have found it doesn’t bother me. In fact, after I saw the movie Temple Grandin and saw that she uses it when talking about herself, it helped me loosen up a little. Thank you for writing this – it has given me a new perspective, and I feel a lot more informed about this debate. I wish I had known all this back when I was initially scolded, so I could have defended myself a little and not felt so ashamed.
And thank you too, for sharing your own experiences. I’m glad my post has helped you 🙂
I’ve heard both arguments… and I understand both… I tend to use autistic, truth be told, I just find it easier at times. But I don’t get offended if somebody uses other terminology. More often, I just refer to her as “my daughter” unless there’s a reason to use terminology in the first place. I do tend to think of autism as something that is just inherently part of her. She is very much wired differently and has been … if not since birth than very close to it (there are things that we didn’t so much notice then, but looking back, it was definitely there). It has created both challenges and gifts. For us, it’s tough to call it any one thing all the time, disability, gift, difference, or something else. That, as much as anything else, would be trying to fit her into a box. So, I’m going to stick with… we love her as she is, and she is who she is, until she can tell us (and I have every hope that she will) if she has a preference… I’m going to stick with – do whichever you’d like as long as you do so with respect for my daughter and my choices for her. And I’ll respect your choice as well.
Nicely said Melissa.
That was beautifully put Melissa! The words we choose do pack a punch but there is absolutely no way to know who they will offend or why. So in our home we always make choices that we’re comfortable with while trying to keep in mind that others may not be. My brothers were autistic. When my mom adopted them that is what we were told and so it was what we told others. I happen to love the word. One of my brothers has said he prefers it because having autism sounds like he should be able to sell it at a garage sale. Being autistic is more all encompassing and so gives credence to the difficulties he has endured overcoming it. He is also very proud of the battles he’s won! Of course, that is just for our family; my brothers. If there is one thing everyone in the world of autism can likely agree on it’s that we all think and see things so differently there is no true way to place rules on others. That’s not to say we shouldn’t observe the effect our words are having on our families and our own attitudes, quite the opposite. It reminds us to be intentional and open minded. Our actions and beliefs are influenced by our words and phrases, but I think in a more personal way that people would like to believe. Also, it is often easier to argue over semantics and try to fight the big fight than to roll up our sleeves and learn to love our own choices, homes and selves. Thanks again, Linda, for taking the time to argue both sides while exampling also choosing one! I just love your blogs!
And thank you too for your thoughtful comment Tsara.
Great post. This is probably the best systematic overview of the issue and the implicit assumptions about it that I’ve seen. I personally avor “autistic”- I’m diagnosed with Aspergers, and I don’t think you could disentangle it from my personality as a whole and still have someone that I’d recognize as me afterwards- though its rarely a big issue to me.
Thanks for your comment John, and thank you for the praise for my post 🙂
I have to tell you you have definitely waded into quicksand with this post. I also have to tell you that I agree with you. I have also written about this subject alot and have been attacked for my views. The truth of the matter is that you have a right to raise your child as YOU see fit and to teach your child how to confront their issues as YOU see fit. Personally in my house we teach the boys NOT to describe themselves with aspergers/autism at all. While they have aspergean issues and traits it is not who they are, it is only how their mind works. Simply put they are are yougnmen with likes, dislikes, needs, desires and talents just like everyone else and quite frankly human beings first and foremost.
Well said Elise. Thank you for your comment.
Lovely discussion! I so much prefer autistic but sometimes use ‘with autism’ if I think others present may find it a bit uncomfortable. What’s also interesting is how this ‘autistic’ word trumps all other parts of people’s identities. Everything else seems to fade into insignificance. So, for example, a Jewish autistic person would be seen as an autistic person. Crazy world really. But love the post 🙂
Excellent comment sarasiobhan.
I also sometimes consciously use “has autism” just to avoid offending people (and to avoid the lectures that come along with using “autistic”); but since writing this post I’ve been much less inclined to pussy-foot my way around the usage: Having run through the arguments and confronted the counter-arguments, I’m more confident in my view that either usage is fine (though I do personally prefer and use “autistic” more often than not). The only lectures I’ll be giving to other people on their chosen usage, is if they get particularly nasty or self-righteous with others in their insistance that “has autism” is the only appropriate option.
Thank you for the Interesting post. I tend to use “has autism” myself, but I am not overly worried about which term others chose to use. Both of my children have recently been diagnosed with autism. One is high functioning, and one is much more severely affected. I am new to the whole internal politics, and the culture of the autism community. I am still very much learning. I have been surprised by the venom I have seen expressed at times when people disagree about things like the possible causes of autism etc. I am not sure such division serves the autism community. I tend to adopt a live & let live mentality. I can form and hold my own opinions, without bashing those who may have a different view point. Isn’t tolerance of differences something we should both aspire to, and promote?
I came across a post somewhere in which a mother said she tells her son over & over, “autism is awesome.” I guess it is possible that I will someday come to view it as a positive thing, but I am no where near there right now. I read her piece, and asked myself how I might feel if I were a child struggling mightily with the extra difficulties that come with autism, when I hear my mother insist that “autism is awesome.” I am not sure he can see it as positive thing either, and wonder if he feels like even his mother doesn’t understand how difficult things are for him.
It breaks my heart watching my children try so hard to fit into a world built by typical people, for typical people, and at least at this point, I don’t see the positives. I wonder if those who view it as positive are those who are in the higher functioning end of the spectrum? Seeing how profoundly and negatively affected my daughter’s life is, and will likely be in the future, I don’t understand the “autism is awesome” view point. For her, autism has taken away so much, it seems tragic, not awesome. We are working very hard to help her learn to do even the smallest things, like communicate her basic needs, I am looking, but so far, I can’t see the awesomeness of autism. Maybe someone, or time itself, will enlighten me.
Very touching and thought-provoking comment kristina, thank you for sharing. Your children are lucky to have such a compassionate and open-minded mother. I wish you all the best with your upcoming and life-long journey with autism. We’re all in this for the long haul; I think it’s so important to try to keep the open-mind you clearly have towards different and changing perspectives of this (also often-changing) thing called “autism.”
I am a year behind reading this post-but with a four year old with classic autism I really appreciate your blog helping me to ‘sort it out’ in my own mind some of these issues. I guess I grapple with some of the issues raised by kristina. Every day my son is the best thing in my life and some days autism is a wonderful thing too. But some days autism really is not…not matter what mental gymnastics I try to perform…I want to will it away-but then I know who I would be left with is someone who is not my son but someone different…and I don’t want that either! I guess I only want to think good things about my child (because he is good!), so when things are truly horrendous I try to separate my son from the horrendous part so that I don’t have to settle with my son being horrendous (which he absolutely is not!). So I do get myself into knots and I feel emotional just trying to sort this through!! I have up to now used ‘has autism’ to communicate it (to myself and others) as a trait and not intrinsic…I’m open to change (absolutely no rigidity from me right now about this!)
A very touching comment kazbrook, I sympathise and I understand your perspective and your choice around language, and respect your reasons. Autism is a complicated and hard thing to get one’s head around and to live with. I wish you all the best.
I have Asperger Syndrome and call myself an Aspie a lot of the time. I even have a t-shirt that has Aspie on the front. I also advocate for Autism Awareness and Acceptance.
I am a male person, not a person with maleness. Likewise I am autistic, not a person with autism. Saying “person with autism” is like saying “a person with a wart,” like autism can be removed like a wart.
I don’t care too much one way or the other. However, I don’t like political correctness very much and the “with autism” term sounds a lot like political correctness to me.
To each his own. I won’t run around correcting people, and I hope that they don’t correct me.
What we need most is more compassion and tolerance for all.
Well said Aspie, thanks for your comment.
Autistic , Aspie , diabetic , or short sighted or hard of hearing ..or any other word should help medical cognition but not provoke STIGMAS .Each individual has a PERSONALITY , an identity .Part of ones identity is the globale sum of ALL characteristics . A person is not simply autistic but a sum of all of his individual personality ..Each of us is “unique” biologically .It’s what we express , repress or atenuate according to social situations that matter .The objective of intervention in autism is to help the child accomodate to different situations ..names are given to help cognition explicitely .Many an autistic child has suffered more in mainstream schools from ignorance of the teacher , or the school kids , and stigmas attached to autism were the cause of bulling and not the label itself .
It’s better to increase awareness about autism , by stating the medical name, rather than somber in ambiguity and misinformation and further confution .
Afterall ignorance is not a measure of existence .
Those are important thoughts for sure Mouna jebeile, but I’m less clear on how they relate to the debate between usage of “autistic” and “has autism.” The issues you identify could just as easily swing one towards one view as the other. Perhaps that is your point; that language usage is secondary to the medical reality? Which is hard to disagree with. The issue here tends to be about how language use impacts on and reflects perceptions, which of course in- turn can affect reality, sometimes in significant ways. If you’d like to comment further on how your views about stigmas and identity impact on the debate, I’d be interested to hear those further thoughts.
You may find the essay “Why I dislike “person first” language” by Jim Sinclair to be enlightening to this discussion. http://web.archive.org/web/20090210190652/http://web.syr.edu/~jisincla/person_first.htm
Thanks for that link Jessie, that is indeed a very helpful and enlightening piece. It nicely sums up some of the ideas I was trying to tease apart. If / when I write another post on this topic, I’ll likely incorporate (and of course, reference) Sinclair’s insights.
Thank you for this! I’m not good at stating my complete feeling but I agree. Either way is good. My son is newly diagnosed and when people ask about him I say he is “autistic.” When he is old enough to tell me what he prefers we’ll go with that.
Nicely put, and thank you for your comment 🙂
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I’ve always used the term ‘Autistic’ to describe my daughter. To me, it seems more like a statement, a celebration of sorts. I don’t believe Autism is necessarily a disability, I believe it is a neurological difference. She is beautiful, unique, intelligent, bright and autistic. Saying she ‘has autism’, makes me thinks of in more of a negative light; “I have crooked teeth.”, “I have a developmental disability.”, “I have bunions.” , “I have autism.” … You get my drift. I just don’t like it.
Yes, I get what you’re saying Mary, and I think it’s important to hear and consider why others make the choices they do around language. Thank you for sharing yours.
I work for a small charity and in our marketing materials we often use the phrase “living with autism” because we want to reflect that Autism Spectrum Disorders don’t just impact the person with the diagnosis – it can impact the family unit, immediate social networks etc.
However, when I am talking about my own kids I often say they are “on the autism spectrum”; even though it is rather cumbersome at times. I think my intention with this wording is to educate people about the diversity of autistic individuals. If I just say “my kids are autistic” or “my kids have autism” most people immediately think of The Rain Main. By explicitly mentioning the spectrum it causes most people to stop, think, and ask questions.
Very nice point and consideration Monica, I like that, and I think it’s great that you’re constantly encouraging others to be aware of and think about the enormous diversity across the spectrum. That’s something I’ve become very passionate about over time; trying to get people to appreciate that diversity and what it means for our children when seeking therapies, medications, support and when trying to affect and inform public understanding and perceptions.
I think sometimes it’s better for people not to be defined with something. Then they don’t create excuses around it.
The purpose of the labels is not to provide excuses, it’s to get the individual the help they need. The fact that some people perhaps misuse or abuse labels is an individual issue, and even then does not outweight the good that comes from knowing more about oneself and about how to best help that person.
I would like to invite you to read an article I wrote entitled ‘Labels’. Please find it at redbubble.com/people/meljanecollette
I am an aspie 🙂
Really enjoyed reading your article here, and as I understand it, I think there is a similar message in my article.
Best wishes
Melanie
Melanie, your words and your art are breathtakingly beautiful. Thank you so much for introducing me to your work and insights.
Thank you!
p.s, I use ‘autistic/aspie’ and ‘lives with autism/aspergers’ interchangeably for both myself and my son, although I find myself consciously choosing ‘autistic/aspie’ more and more, especially after writing about labels (and then receiving comments that confirmed how people are unable to separate negative connotations from labels for various reasons).
I shall continue to refer to your article. Thanks for taking the time and effort to write about it!
Best wishes
Melanie
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I just recently had my first encounter with someone who disagreed with me in the two terms . She didn’t just disagree she was down right nasty about it and told me I was wrong . We all have different experiences and any word can become nasty depending on how it is used . As parents we should t attack each other over words because autism is a complicated disorder . I have a tendency to try and avoid describing people . For instance im white and if someone calls me a white person I get upset because I have a name . I try to be careful with my words because I know everyone has different views and I want to respect that as I would want them to respect me . I don’t want to post what terms I use because it really doesn’t matter . I would like to find a good community of non judge mental parents who I can share stories and vent with , I was just googling and came across this but if anyone who sees this knows of a group online that is like that pleaSe let me know 🙂
I use “on the spectrum”–because it keeps my autistic identity with a community word (visible only to those who share my culture), but is innocuous enough to use to out in the world–to hide in plain sight.
Hi. I loved this post. I wonder if I might have your permission to use a quote from this post in the book about autism I have written.
Jenny
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