2023 Update

This is a personal blog started in 2011. It is no longer active, updated, or maintained. Unfortunately, it appears that I've also irreparably broken some of the links by accident.

04 August 2011

The Significance of Semantics: Person-First Language: Why It Matters

An accessible audio recording of this article:

At the Adult Services Subcommittee's final meeting last Wednesday, much to do was made about semantic disagreements -- "ASD individual" versus "individual with ASD," and of course, the dreaded "person with autism" or "person who has autism" versus "autistic person." These issues of semantics are hot button issues, and rightfully so.

Words and language are powerful tools by which an individual can express ideas, whether abstract, actionable, or concrete. As a writer and editor, I know firsthand that language and the meanings we attach to words very much impact, influence, develop, and change the attitudes that we have toward the subjects of discussion. That is why people are easily insulted or upset by word choices. Changing a phrase -- even if it holds the same literal meaning -- alters the subtle connotations and nuances of the speech, and communicates a different meaning and context than the original phrasing.

In the autism community, many self-advocates and their allies prefer terminology such as "Autistic," "Autistic person," or "Autistic individual" because we understand autism as an inherent part of an individual's identity -- the same way one refers to "Muslims," "African-Americans," "Lesbian/Gay/Bisexual/Transgender/Queer," "Chinese," "gifted," "athletic," or "Jewish." On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as "person with autism," "people with autism," or "individual with ASD" because they do not consider autism to be part of an individual's identity and do not want their children to be identified or referred to as "Autistic." They want "person-first language," that puts "person" before any identifier such as "autism," in order to emphasize the humanity of their children.

Yet, while I have been familiar with this rift among the autism community over the use of "person with autism" as opposed to "Autistic person," I hadn't fully explored the diversity of perspectives on the topic until now.

During last Wednesday's meeting, one subcommittee member, who I believe is the parent of an Autistic child, and an Autistic self-advocate expressed disagreement over the terms. Feedback from one of our members suggested changing "ASD individual" in our report to "individual with ASD." The Autistic self-advocate sitting beside me, who also has an Autistic brother, voiced her objection to use of the term. "I disagree," she said as the suggestion was read aloud. "I'm not a person with autism; I am Autistic."

Immediately, a mother sitting next to her responded, "I come from a time where that word, 'autistic,' had -- still has -- a negative meaning. It's offensive. When someone refers to my son as 'the autistic,' I cringe at that word; I get ready to defend him."

After our meeting, I took the time to explore a wealth of opinions online about the use of person-first language -- from those who support it and those who oppose it. The theory behind person-first language is that it puts the person before the disability or the condition, and emphasizes the value and worth of the individual by recognizing them as a person instead of a condition. And that's a great idea. In fact, when discussing specific people, I have never once heard anyone -- self-advocate, parent, teacher, or otherwise -- refer to a person as anything except by his or her name. I can't think of any teacher -- at least any decent one -- who would refer to a student as "that Autistic kid," or "that kid with autism." And I certainly can't think of any parent who wouldn't refer to his or her child by name.

But why are we self-advocates so opposed to this terminology? Aren't we all about de-emphasizing and correcting inaccurate, misleading, and harmful stereotypes and attitudes? Right? From that other perspective, you would think we would support the use of person-first language, because we want to be seen as people with equal rights, value, and worth to non-Autistic people. But we don't. Because when people say "person with autism," it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn't true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.

One argument I encountered in one of the more cogently-written papers in favor of person-first language expostulates that because cancer patients are referred to as "people with cancer" or "people who have cancer," as opposed to "cancerous people," the same principle should be used with autism. There are some fundamental flaws with this analogy, however.

Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person's identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive.

Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person's identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.

What I found most interesting in reading this selection of articles and blog posts is that many of the same arguments are used for both positions, but with separate sides, naturally, coming to very divergent and contradictory conclusions.

Firstly, I saw in at least two articles in favor of using "person with autism" that the authors strongly oppose language referring to disabilities like "suffers from," (i.e. "Alan suffers from Asperger's syndrome;" "Joey, an autism sufferer;" etc.) which has traditionally been a talking point of self-advocates as well. I do understand that not everyone who supports the use of terminology "person with autism" would disagree with language like "suffers from," but it is still interesting that there are those who do. It suggests a fundamental shared value -- that people with different neurological conditions are not "suffering" because of their difference or disability.

Secondly, as alluded earlier, those on both sides want to emphasize the value and worth of the person. Person-first language advocates believe the best way to do this is through literally putting the noun identifying "person" before any other identifiers. (As noted in one of the other articles opposing person-first language, however, English is a language that puts adjectives before nouns, whereas there are multiple languages that always place adjectives after nouns. In Spanish, for example, "person with autism" is "persona con autismo," while "Autistic person" becomes "persona autística." In both cases, autism/Autistic follows the noun.) Person-first language opponents believe the best way to do this is by recognizing and edifying the person's identity as an Autistic person as opposed to shunting an essential part of the person's identity to the side in favor of political correctness.

It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as "a person with autism," or "an individual with ASD" demeans who I am because it denies who I am.

Lastly, what is most interesting indeed is the shared expressed sentiments that using or not using person-first language is necessary to change and shift societal attitudes toward Autistic people. Returning to the premise of this article, this is the sole reason why this debate continues to be argued and why many people on both sides regularly emerge upset and feel personally attacked. Language does play a large role in shaping societal attitudes.

But let's think about what we are doing when we use these terms. When we say "person with autism," we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word "with" or "has." Ultimately, what we are saying when we say "person with autism" is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual's identity as an Autistic person because we are saying that autism is something inherently bad like a disease.

Yet, when we say "Autistic person," we recognize, affirm, and validate an individual's identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person -- that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual's potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people--and that that's not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

That's why, when I read a few articles scoffing entirely at the debate, and dismissing it as ultimately irrelevant (insisting that each person should use the terminology he or she prefers and to ignore what other people say or write), I was concerned. The question of person-first language is definitely important and cannot be disregarded. The way we use language affects those around us -- in our immediate communities and in society at large. Trends of language have the power to transform ideas and attitudes. To dismiss this as "a silly semantics argument" denies the power of language.

What does, however, disturb me is the vitriol during debates about this (and similar) topics in the autism community. While it is, as repeatedly emphasized, an important debate with huge ramifications both short-term and long-term, hurling ad hominem insults, making baseless accusations, and shouting over tables (or computer screens) at the people on the other side ultimately demeans both you and them. It shows great immaturity, inability to civilly and peaceably discuss important topics, and insensitivity to the personal experiences vested in each of us with a stake in this debate. Having strong opinions on a topic and being able to have a respectful discussion with someone else are not mutually exclusive.

So what can we do moving forward? Or, more importantly, what should we do? To those of you who use "person with autism," I will always respect your Constitutional right to express yourself however you like, but I urge you to reconsider the consequences of using such language. To those of you who use "Autistic person," I urge you to consistently use such phrasing everywhere possible, whenever discussing autism and issues that affect Autistic people, and to develop coherent, rational explanations for why you prefer this terminology, so that you can engage in such mutually respectful and civil exchanges with others.

That, actually, goes for everyone. If we ever want to accomplish anything as a community, as a movement, or as advocates, we cannot allow ourselves to be constantly divided by infighting and vicious bullying -- and yes, that occurs from all sides of these debates, not just one. It is imperative that we learn to engage critically and respectfully with one another, and to value each individual's voice and feelings as equally important. Otherwise, we'll become even more dysfunctional than my subcommittee has been in recent months.


You can read the second part of this argument at “Identity and Hypocrisy: A Second Argument Against Person-First Language,” which was published in November 2011.

Interested in other perspectives? Here are some links to feed your curiosity.

(A note: I believe fully in the freedom of expression and belief, and do not believe in censorship of people with whom I disagree. Thus, I have no policy about excluding or ignoring any particular individual, organization, or idea when linking offsite. Links offsite are not to be construed as endorsement or acceptance of the ideas and opinions expressed therein. If I have wrongfully classified your article [and I did read them all, but may have misread], please let me know and I'll move it to the correct header.)

People who use "autistic" or "autistic person":
- Why I dislike "person first" language by Jim Sinclair, founder of Autism Network International (ANI) *full text
- Dear "Autism Parents" by Julia Bascom
- Autism-first Language by Elesia Ashkenazy, National Advisory Council of the Autism NOW Center
- I don't have autism. I am autistic. by Kassiane Sibley (new!)
- On Language by Gordon Darroch
- Autism First (Again) by Jeff Gitchel (new!)
- People-First Language by Twitchy Woman (new!)
- Reply to a Disgruntled Reader by Leigh Merryday (new!)

People who use "person with autism" or "person who has autism":
- People First Language by Kathie Snow (PDF)
- The Power of Language by Michele Guzmán of the University of Texas Hogg Foundation for Mental Health (new!) This was written in direct response to the Autistic Hoya article.

People who use both interchangeably:
- Autistic or Person With Autism? by Susan Senator (new!)


  1. I have a recent blog entry on this topic. I would have cut and paste it, but there seem to be limits on how much you can put in a comment, I guess.


  2. Hi Jeff! I added a link to your post to the list at the bottom of the post. I thoroughly enjoyed reading yours as well. (I'm not sure why there is a character or word limit. I'll fiddle with the setting later.)

    Blessings and peace,

  3. Lydia, very insightful. And, thank you for the collection of references. I'm familiar with a lot of them, though not all. One that you might want to add is:


    Just one question: why do you capitalize "Autism" and "Autistic" -- that seems to be a Lydiaism...

  4. I'll take a look at the other article tomorrow. I'm not the only one who capitalizes "Autism" and "Autistic." (Although I inconsistently capitalize "autism," whereas I always capitalize "Autistic.") The reasoning behind this is usage as a proper identifying noun. The Deaf community always capitalizes the word "Deaf," and so I capitalize the word "Autistic." It was, I believe, Ari Ne'eman, who first brought this distinction to my attention.

  5. Michael: I did read through the article you linked today. While it was interesting, and will probably warrant a response from myself in the near future, it doesn't relate directly to the topic of this particular post, which is person-first language. The post to which you linked focuses more on diagnostic labels than anything else. The author also uses "autistic" most of the time, and "with autism" once or twice, which is an interesting inconsistency.

  6. When I'm paying attention to my capitalization (which isn't often since I got the iPad with it's auto-correcting), I use lower case when I use autistic as an description. I use it the same as "I am a tall person." Or "that person is smart." I tend to use a capital "A" only when I want to make a strong differentiation and positive emphasis on Autism. Which is, I think, part of the reason the Deaf community may do this: to exhibit pride in their difference.

  7. http://timetolisten.blogspot.com/2011/05/i-dont-have-autism-i-am-autistic.html is my more recent post on the issue (that one up there was like, 2003ish? 2004?) It has some bad words.

    Thanks for adding one more voice to the discussion. You always sound so...diplomatic & I kind of envy that skill!

  8. What about saying "on the spectrum" i.e. "I am on the spectrum" or "my son is on the spectrum?" To me it sounds equally indicative of a difference rather than a pathological process and likely less effrontive to particularly sensitive individuals concerned with stereotypes. What do you think?

  9. When I called my son a child with autism, and believed he "suffered from autism", I treated him like the "other". I'm not kidding. I'm kind of ashamed of those times. I separated the two.

    Just sayin...

    1. not same anonymous from above, let tha tbe said. second, dont. my mom said those same things, and it just made me feel ashamed at first of not being good enough, but as she showed me she loved me i realized she did it more as instinctive way of explaining it in a normal way that others would understand. people do suffer from autism. its frustrating to ask for a peanut butter and jelly when you dont know how to talk. but if its said with understanding, not the tone of "oh, he's diseased. woe is him, it must be awful that he has such a terrible condition" then its fine. pity just makes me angry. we have pride as well, but sometimes the boundaries are outside the normal range. as long as you show you care, its the fact you tried that matters. even if we dont understand it. just like dogs show affection to eachother (i dont want a single complaint about comparing auts to dogs. It is a simile, relax you super-human-rights-freaks)in different ways, but shwing them affection through our way is just fine. you dnt need to sniff anything terrible, just hug and say you love us and TRY to understand. just try. get creative (no injections. dont try it, that IS offensive and wrong. its a manner of thinking, not a disease I DONT CARE WHAT PHYCOLOGISTS SAY N THAT)

  10. Wonderful conversation here! I wanted to add to the capitalization of the word Autism or Autistic. Lydia is correct in her connecting it to the Deaf community. However, not all deaf people are Deaf. By this I mean it is a cultural label. If you are English, Italian, Spanish, America, etc. The word is always capitalized. It is a cultural label. A proper noun as it is. Some deaf people identify themselves as part of a larger cultural community that is the Deaf culture. They share cultural norms, values, and a language. This is also true of Spaniards, Germans, Jews, etc. I believe this is the movement that is emerging related to autism as well. For whatever it Si worth, Anna

  11. In my "Introduction to Autism" page (the link is above at the top of every page on this blog), I do note that the most neutral thing for an individual to say is "on the spectrum" or "on the autism spectrum." This is unlikely to offend the majority of people on both sides of the person-first language argument; however, as some people -- both Autistic and non-Autistic -- raise objections or alternatives to the model of autism as a spectrum condition, may also be a loaded statement.

    I still prefer to identify as "Autistic" rather than "I am on the spectrum," mostly because while the spectrum model has its merits, it also presents itself with underlying connotations that I am not willing to accept.

  12. People are very sensitive about Semantics. I'm just glad to hear the Autism or Autistic. I do side with those who "see the individual first" because I never "thought so much" about the semantics (unlike those on the Spectrum ;o) so now out of respect for difference, I say "My son has Autism" but I get the Autism out there because everyone is afraid of that word...and they should NOT be! I think it's because they are uneducated and that's the main reason. So let's TEACH them!

    1. I am sorry, but that is just not how it works in real-life. When you side with the "see the individual first" crowd, you do persons like myself wrong. When Lydia made comparisons to calling her Person With Chineseness or the like, I just about fell over with joy. If you think you "see the individual first" when you call them "person with", you are wrong. And if you call me something like that to my face, the words dead wrong apply.

    2. Again, not the above anonymous. I dont know who he or she (guessing she, i just figure moms as the type t say "my son" more. plus, most dads ive met dnt get into these chats as much as i think they should) is, but she's pretty clse.
      That is how it works in real life. Autism isnt an ethnicity, or a religion, or a sexuality, no matter how special you want it to stick out. I may be high functioning, but when i see a man who can understand that he wants a woman to hug him, but all he can think to accomplish that is by hugging her (no matter how random), i think thats sad. I understand the frustration, cause i was the same way.
      The word autism should be out there, just like the word gay. If i asked a close friend if he was "homosexual" or "sexually attracted to males", he'd hit me just cause i danced around it so much it MAKES it sound offensive. If one of my friends said "are you on the spectrum" or "You are an autistic person, correct?" id explain to them fast how offensive i take that, and id educate them on the proper way to treat me like a human being. "do you have autism?" id say sure. Its not offensive, its a question. its not a racist term or religiously offensive comment. it is a question, with hnest intentions and a direct normal format. sure, talking to me like im some badly maimed victim with a head injury (no offence to those who have thse intended, but you should know thats circumstance, and nt something youre born with) will make me unhappy, but otherwise, treat me like i have some feelings, and wont get prissy over some ignorance fueled curiousity. I was born autistic. that means
      (a) i have autism
      (b) i am an autism, or aut, or autie (that one is a little offensive), ot an autistic person, or person with autism, or whatever combination or permutation you can come up with that.
      and (c) autism can be difficult. its not a race, even thought im born with it. its not a religion, even though it ften cmes with its own beliefs and lifestyles. and Im not stpid, i just think different. as einstien said "if yu judge a fish's intellegence by how well it climbs trees, it would be stupid". if you judge a person's intellegence by how well he can keep a stable intimate relationship, doesnt that make half the planet somewhere in the negatives? dont try to stress "IM AUTISTIC, WE ARE OUR OWN PEOPLE"..... dont stress the capitalization please, i may be "special" but im not gonna start getting shot at because smeone took one look at me and knew i was autistic, so i dont think i need to stress the importance of my "disability" (that term for us though is bull****). we do have our own look though :P my aut-dar (like gay-dar, but for auties).... also, Auties should be OUR word. if youre gonna MAKE us be treated like we are our own ethnicity, I want a word only we can use.

  13. Most self-advocates? I am a person (person first) who has been diagnosed with a man made concept called "autism" also said as autistic disorder. Why would anyone call me a disorder label. Some self-advocates in certain advocacy circles a majority within those circles for political purposes want others and in fact demand otherwise they call it bigotry to call me a disorder label for their politics of asserting how autism which are mere symptoms that traditionally are diagnosed if life impairing because they don't take it seriously. The differences which do not impair life functioning are not a disability! Ultimately someone can say they are pink with purple poke-a-dots so as long as they don't assume I want to be and just "ASK.

    1. we're refered to as autistic people and not people who are autistic because of the general nervousness about what to call us. plus, its a pronounced disorder, commonly used as an insult (at least where i come from. and not just within the county.... within this one and all the counties around us) so it is how people become most accustomed to its use. besides, I am guilty of calling developed mentally challenged people (i am diagnosed one, but i think they messed up. and that way of saying it mre offensive)retards. or retarded people. I dont want to have to go the extra polite mile to say people who have mental retardation, when i doubt they understand the difference in wording. maybe thats mean, but truly, extremism makes something worse. and you can say its bad to have such a loose moral policy on these things, but youre the bad guy for taking it so far as to demand your phrases and that i have to dance around you constantly with words. if youre black, i say it. not "you are a person with african complected skin and origin". if youre gay you are gay, not "one who has homosexual tendencies". if you male, female, retarded, white, autistic, have agoraphoic or catholic.... you are those things. dont make people do gymnastics with their mind to appease youre pride... thats ego people, and at least if they're going through the effort to learn about you, dont be an *** and make them beat around the bush to make you happy. even parapaligics dont mind all that often if you call them "that wheelchair guy". yes i knw he's a person first, but being in a wheelchair is a defining feature, just like autism is. accept it. there will always be fanatics, and those extremist fanatics will dominate these chats cause they want the extreme, but dont fall for it. thats pride. vanity, self love, ego. some people flip if you even bring up their race, trying t make it sound like you "classify them" that way. and now people are doing it with autism.
      stereotypes are stereotypes for a reason normally. get used to it.

  14. When we do finally found out that there is life on another planet, at the rate we are going, one of the aliens is going to wipe us out because one of us called them "person with Proxima Centauriiness" or similar. You just wait.

  15. I just completed a top graduate program in Speech-Language Pathology that made a huge point of teaching the clinicians to use Person First language. I think these young women would be horrified at now being asked to call someone Autistic instead of a "person with autism." Not that they shouldn't: I fully understand your reasoning and naturally believe that people get to define their own labels. I just find it interesting (and a bit amusing) to think of the de-programming that will have to take place to get them to change their mindsets. It definitely brings to light the fact that no matter how much clinicians think they're understanding the people they work with, there's always more we can do to get on the same page.

  16. Hi Lydia, I just want to say thanks!! You write articulately and speak honestly, something sorely needed in the efforts to advocate for Autistic people. I hope it's OK that I have been sharing your posts on my Facebook page! https://www.facebook.com/MyAutisticJourney Do you have a Facebook page I can link it back to?
    Thanks, and Best Wishes, Michelle from http://this-is-not-what-i-signed-up-for.blogspot.com.au/ (please don't misunderstand the name of my blog- it is a reflection on the fact that parenting Autistic children was unexpected, but that the journey is very rewarding!)

  17. INCREDIBLY interesting! My background: my brother is autistic and I have worked for a disability organisation in which I was making written submissions to governments, therefore language was intensely important. I was grilled on the "person first" mantra - the organisation represented "people with spinal cord injury" ie paraplegics & quadriplegics. I understand well the argument for "the person first" and I have to say that in my experience, it does in fact help the general population focus on the person rather than "label" them first (especially where the visual is so powerful as it is with wheelchairs). However I also see the value in calling it how it is. You are right, you cannot separate autism (or paraplegia) from a person. It is part of them and their life. I also see disability as significantly different to disease so no, we would never use "cancerous person". I have to admit that in every day language when talking with friends. I tend to use a complete mix of all the examples - but even with my experience, I use 'person first' less than I thought I would. I am actually more comfortable using terms like "autistic". That said - as I wrote above I would not say "my autistic brother" I will say "my brother who is autistic". So there is a mix of the 'person' first and it is the language that softens. But as I said for me, this is something much considered and learned until I arrived at the point of comfortable. The general community does not have this ability to delve into the semantics as I have. I actually think it is a good thing for people to learn "put the person first" (although I love your analysis of European vs English order of nouns). It does help people to address the person and consider the person first - the ability first as opposed to the disability first. For those of us who know better, we can comfortably speak using terms interchangeably without condemnation or "labelling". By the way, the government still needs to be educated... I have seen fairly recent documents that still use terms such as "sufferer" with respect to disability services (LOL - disability services as opposed to "services for people with disabilities"!). And to add for fun: I have one pet hate on semantics... "disabled parking"!!!!

  18. What a fabulous post! I am the wife of an Autistic man and mother of an Autistic son. I have always preferred to use this terminology even when I might use person-first elsewhere (and I tend to refer to myself as a Marf instead of a person with Marfan syndrome) because I see autism as being part of my husband and son's identities. However, I don't know many other Autistic adults and I wasn't sure if it might be offensive to other Autistics that I wasn't using person first, so I tried to do a mix when writing. Now I'll feel more confident in just using Autistic.

  19. It also should be considered that "person with autism" is simply unartful, gratuitously wordy language. It calls attention to itself because it's unnatural phraseology. This by itself puts the onus on the other side to justify their strained efforts. It is ironic that people advocating the simple use of "autistic person" are regarded as being excessively political and insensitive. We do not need to say that we are "people". How is this not clearly identifiable act of desperation: a defensive and apologetic approach that is weak, and wallowing in obvious regret and negativity? "I am a person who lives in a house." "I am a person who is 6'1". "I am a person with right-handedness." Worse still, "I am a person who suffers from right-handedness." Really? Are you kidding me? This beyond absurd. it is not the route to strenght, empowerment or success. We need to stop kidding ourselves and playing these kinds of games: The issue is not language. The issue rather is whether people see autism as a simple reality and an enriching human variation, to be accepted and embraced as a historically documentable benenefit to society... or as a horror to be denied and "cured" (i.e. eliminated from the world). This could not be clearer to me. This latter approach is entirely irresponsible. As one who actually has lived with it my entire life, as opposed to a busybody spectator, I frankly find it offensive and really obscene that I am asked to respect these pathetic games initiated by people who would prefer a world without me in it. I refuse to indulge this, or to let them get away with spreading this kind of destructive nonsense at my direct expense, out of their personal fear, pettiness and provincialism.

  20. Moreover, since, as you say, in English most important word (the noun) usually comes last, how does it even linguistically make sense that it would de-emphasize the word "autism" to put that last in this position? In "autistic person" the noun (the most important thing that the adjective simply modifies) is right where it is expected to be. I find none of the arguments on the other side sensible, or worthy. Even as a linguistic matter I think word order is not so much relevant as the word "with".

    In "autistic person", what is clearly being talked about is the PERSON--precisely what person-first advocates claim they want. In "person with autism", you are talking about "person" + "disease", adding more weight and more emphasis to the distinction than than in the first case.

  21. When we refuse to call ourselves "persons with autism" (and I agree with the refusal!), how do we get through training/employment in progrms that receive any Federal funds? Such programs ALL require staff/students to use "person with ____ " verbiage: you can be fired' or flunked from professional training, fir saying or writing "autistic person" in an exam-essay, a research-article,or a memoo or report.

  22. I have been trained to use the people-first perspective for so long that it's automatic. Your perspective is eye-opening and very humbling - I will certainly be giving this a lot of thought, and likely reconsidering how I use people-first perspective in general. Thank you.

  23. I have come over via the 'person first' post on http://www.mmonjejr.com . this is another great blog and your post rightly points out how much the way the debate on the terminology is carried out is damaging communication and information or actual change of minds towards the less initiated. I am at the beginning of this journey with my son and am learning every day. I can't say other than that I am enjoying to read your and Michael's perspective on this. it really makes sense now.

  24. Hey Lydia
    I am seeing your site, or references to your site just about everywhere. I found this post through ASAN. I'm new to blogging on autism, but if you get a second, I would love to share my 12/15/12 post with you 'To Be or Not To Be Autistic' on my site: srsalas.com

  25. @ Michael Forbes Wilcox: In my mind, autism is the way anti-Autistics who think our Autism is seperable from us write it, whereas Autism is the way it should be written because it's an intrinsic part of our personalities and capitalising it helps us to define ourselves correctly. That's why I always capitalise it unless I have a reason not to, like in the paragraph above.

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  27. Thank you for educating me about the importance of language. Unfortunately, on my site I've used "persons with Aspergers or people with autism" far too much. Thanks to you, I'm going to be changing that. Your writing helps me be a better parent and therapist.

  28. Hello Lydia. I am on LinkedIn in several autism related groups and would like to post a link to this article. May I?

    There are autistics, autism parents, and autism professionals on the site - quite a variety, and the "person first" comment recently derailed a discussion. I want to put the discussion out there, and hopefully survive the fallout. But it needs to be put out there. One comment was "what do we call those who can't speak for themselves?" An autistic blogger friend of mine basically said, "maybe we should at least respect the people who at least share their neurology if not their exact symptoms?"

    I'd love your thoughts on this before I make the link and start the discussion. Thank you.

  29. But I'm not an autistic, or an autistic person; the autism doesn't define me and is only a problem, only a diagnosable disorder, because I struggle to overcome the difficulties it creates.

    I don't understand how "person with autism" implies that they are separate or non-integral any more than "person with a brain" implies that the brain is unimportant or detracts from personhood.

  30. Please look up the word "cancerous" in the dictionary. "Cancerous person" doesn't mean what you think it means. http://dictionary.reference.com/browse/cancerous?s=t
    Also, you CAN put adjectives before the noun in Spanish.

  31. Lydia, if it is necessary to use a label, I believe the best one to use is the label preferred by the person being labeled. Barring that information, the next best label is the one preferred by people like you, leading advocates of the community who are being labeled. With fondness to you, I am Dave in New Jersey, a fellow Hoya with a lifelong disability.

  32. As a spectrumite, I enthusiastically endorse this article. Being "on the spectrum" is not something that's separate from me; if I were not autistic, I would be a very different person.

    It happens that I have a particularly sharp comparison close to hand: One of my sisters is just as intelligent as me -- she went to MIT while I went to Harvard. She's a remarkably capable person, both technically literate and linguistically gifted. But she's not on the spectrum, and I am, and damn right it makes a difference.

    Despite being comfortable with technology and having gone to MIT, she doesn't come across as a "nerd" the way I do, doesn't have the micro-obsessions of a spectrumite, doesn't show the abrupt shifts between "attention deficit" and "hyperfocus". And while she's no "social butterfly", she's comfortable dealing with strangers, groups, authority, and more, in ways that I can't ever be. And all that has sent her life and her personality in a very different direction.

    By contrast, my depression is separable from me, it's not always present and when it is, it feels like something distinct from my identity, indeed an affliction. But being on the spectrum, that's part of my human condition. (See also Wikipedia: Egosyntonic and egodystonic),

  33. Perhaps people are both "autistic people" and "people with autism"? Certain aspects of autism are clearly part of a person e.g. thinking "outside the box", noticing how odd certain social norms are, realizing how much of mainstream society is based upon implications. Others are clearly separate e.g. how well people articulate themselves, getting thoughts across, being able to speak, having meltdowns.

    Some nonverbal autistic people may feel it's a fundamental part of their identity in the same way some in the Deaf community do. But couldn't one argue that someone like Temple Grandin learning to speak is a bit like a deaf person becoming able to hear? Whereas THINKING as an autistic person is like someone's race - it's a fundamental part of an autistic person's identity.

    It also depends on circumstance, especially when it comes to what people call themselves. Someone may be a "filmmaker" on the top ten greatest films list, because their gender or sex is irrelevant there, but a "female filmmaker" at a feminist meeting or when telling stories about women, because in these instances, it fundamentally affects their experiences.

    A lot of the people who prefer using "person with autism" are parents who have trouble communicating with their children. If you see autism as primarily as something stopping you and someone you know from communicating each other, it's understandable that you may prefer to see autism as a separate entity from the person.

    1. Temple Grandin learning to speak isn't like a Deaf person learning to hear - it's like a Deaf person learning to read lips and speak. She didn't get less autistic just because she learnt to talk. In fact, brain scans show that she uses a very different process to speak and understand speech than most people, because one of the primary language areas is not functioning properly in Temple's brain.

  34. "Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person’s identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive."

    The cancer itself isn't part of someone's identity, but having survived cancer can be. I've heard many people describe themselves as 'cancer survivors', often with a sense of pride about it. Many cancer survivors feel like the cancer was a life-changing experience that has made them into a better person.
    A research study about identifying as a cancer survivor can be found here:

  35. Really like this article. Also I saw a transgender awareness patch by SapphicStitches on Etsy that said ‘My pronouns are not preferred they are mandatory.’ It made me think that for Autistic people, the decision to call ourselves Autistic or saying I have autism is a bit like our preferred (mandatory) pronouns.

  36. Whoa! What a total relief to read this article Lydia! I'm autistic. Diagnosed only 4 years ago at age 48! It has rocked my world in both good (great) but also complex and tough ways. I was also soon after diagnosed with significant ADHD. But these diagnoses come after a loooong struggle with very significant CTD (complex trauma disorder - or C-PTSD). So the symptoms of this have hidden / cammouflaged my ASC/ADHD. Huge but also arduous wake up call. I live in Sydney, Australia and in the performing arts. As I also do wider community outreach work and have finally set up a fully-fledged company, my partner and I are in the process of compiling a large referencing document of access needs - for myself and others we often work with who live with other disabilities. I absolutely prefer "Autistic" - it is unapologetically descriptive of an neurological truth / realness and, I'll definitely claim in my case, empowerment. I've struggled against the ignorance all my life with people trying to water down / minimise my CTD and having them always affronted by how forward and detailed I'd be when explaining why they were being so prejudiced in both their use of language and attitude. Thank you for this precision. I was researching the semantics of "neurodiversity" and happened across this and it has really helped. I'd like to quote you within this document if that's OK? Oh, in fact I see below I can email you direct. I'll try that too. All the best, Dean

  37. This is a very insightful article and I am grateful for the perspective you have given me, since I am not autistic and have used person-first language in the past while working in the field of education and mental health. I was curious as to one subject that I haven't seen in any comments on here. I know a lot of people who refer to either themselves or others as "on the spectrum". What do you think of this identity? I have also used in previous references, but it now seems that this is also person-first language, but maybe I am wrong. Would be really interested to know your or others' opinions on this.

  38. Is there polling on the preference in the ASD community between identity-first and person-first labels?

  39. Hello, I'm sure you're aware by now but your audio files run through Adobe Flash Player, which is no longer supported, therefore the audio files are not playable. This is not a problem for myself, but I was unsure about those who may prefer or require audio vs. visual text. Obviously this is an old article, but it is also linked to the Autistic Self-Advocacy Network and there may be new people such as myself finding themselves here. I wish I knew how to convert stuff like that from Flash to something else easily enough - unfortunately I'm not that knowledgeable about plugins and implementing animation/audio via plugins into websites. That aside, I love this article and explains very well how I've felt about identity-first language since being diagnosed 4 years ago, but I was never able to describe it or justify it until now.


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