Reply to a Disgruntled Reader: On Person-First Language and Autism

From a Reader:

 “Because you are a teacher, you should know that children are not autistic. Children HAVE autism. The behaviors are autistic. How would you refer to a child with cancer? Surely, not canceristic.”

Dear Reader,

I read your comment and set it aside.  I waited because there isn’t a correct way to respond to this.  I can’t win no matter what my response is.  Clearly, you are strongly of the opinion that people should place descriptions of children AFTER the noun “child”, presumably because you want to stress “child” rather than “autism”.  I realize that you do not want to see children defined by a condition.  I get that.  I do.  But I would be lying to you if I told you that I agree.

Just a few days ago, my friend Jenny, also an autism mom, made the comment that she wished people would stop using the term “children who have autism”.  She thought it sounded like some dread communicable disease.  You know, like “I have crabs” or something equally disconcerting.  At the time, I remember thinking how funny that was – precisely because I have heard impassioned arguments to the contrary!  I remember thinking that, no matter what one says these days, you offend somebody.  And, clearly, I have offended you.

Abraham Lincoln once made this dry criticism of a writer:  “He can compress the most words into the smallest ideas of any man I ever met.”  The English teacher in me loathes wordiness.  It obscures meaning, as one is too busy shoveling crap to get to the main idea.  I believe that political correctness has forced us all to spend a great deal of time adding more and more words into our sentences to describe… the obvious.   I don’t use vulgar slurs.  And I dislike hurtfulness in all its forms.  But I believe that we can rearrange the adjectives and nouns to our heart’s content – and not change a thing except to make it immensely difficult to get out a single sentence without pausing repeatedly to shift around all the words.

Our society is already quite comfortable referring to certain groups of people via description.  The deaf community.  Senior Citizens.  Diabetics.  Brunettes.  Gifted children. You don’t hear many screams of outrage demanding those persons be called “groups of people who are deaf”, “Americans of advanced age”, “people with insulin resistance”, “women with brown hair”, or “kids who are much smarter than their teachers”.  You simply don’t.  I can rearrange all of the words into new prepositional phrases and -you know what?  It won’t change a thing.  Even in the autism community, people with an Asperger’s diagnosis affectionately refer to each other and themselves as “Aspies”.  Search the internet, and you will find dozens of websites with funny t-shirts designed for autistics and aspies who want to proudly and amusingly claim their unique status.

For many months now, I have been likening observations of my son to having three sets of eyeglasses.  We analyze his behaviors in terms of him being two years old, being autistic, and also simply being Callum.  But the frustrating part is that I cannot classify any of his behaviors using just one pair of glasses.  For he is all of those things.  Remove one, and he ceases to be the little boy that I love.  He is an autistic two-year-old boy named Callum.  Converting the adjective into a prepositional phrase will not change anyone’s perception of him.  Nor do I believe the argument that it will change his perception of himself.

The thing is, I am certain that there will be folks who reply in to this, passionately disagreeing.  There will also be people replying in, passionately agreeing.  Yet nothing conclusive will be determined.  People might fight about it and spew insults.  And some will want to sing “Kum Bah Yah”.  But neither side will emerge the victor.

And all that drama would be a shame.  Because, I promise you, promise you, my feelings for my autistic child are every bit as loving, protective, and passionate in my belief and faith in him as yours would be for your child with autism or some other reader’s child who has autism or her friend’s child battling autism.   To me, and others who agree with me, they are the same child – regardless of the part of speech.

That’s why I didn’t quite know what to say to you.  Because I won’t win.  People will be upset.  And, we have enough controversy in our community.  We have divided camps over DSM classifications, vaccines, biomedical approaches to autism treatment, genetic research, etc. etc.  I think it isn’t particularly helpful to any of us to insinuate that some of us are insensitive simply because we prefer the adjective lead the noun.  Nor do I think that people who see it differently are idiots.  I think it is a preference.

But it hurts me to think that folks with a different opinion would accuse me of insulting children.  For I love each and every autistic child that I teach.  And I love my child with autism.  I don’t want to upset anyone, but I will inevitably upset someone.

So, that’s the best response I have to you.  And it still isn’t satisfying to either one of us.  But I want you to know that I mean no harm.  And I wish you all the best.

85 thoughts on “Reply to a Disgruntled Reader: On Person-First Language and Autism

  1. Jenna

    I also call my son autistic. I don’t really see why it matters. I just wish that autism was the only problem he had. I would love to be able to say my child is autistic and leave it at that.

    1. Jeri Carder Pardue

      My grandson is autistic and I teach autistic children. I believe that autism is NOT a disorder, it is a different way of being; therefore, autistic person is the appropriate way to identify that.

      1. Dawn Kirkpatrick

        Jeri, I love how you phrase this. I have been hearing this type of comment from time to time in my ASD learning journey – Autism is not a disorder but a different way of being. I know my grandson certainly is a special little guy.

  2. outrunning the storm

    This is the second time I have read a post of yours and been filled with so many thoughts and feelings I can’t organize an articulate comment, so i will just say flappiness is… maybe my new blog crush. 😀

  3. Dearna

    #YouMightBeAnAutismParentIf you’ve spent a lot of time debating ‘has autism’ vs ‘autistic’ and still feel comfortable with neither.
    This was a tweet from Jess at Diary of a Mom, your post reminds me of it. And I’m with Fi, who really cares anyway.

  4. Sue

    I’ve been thinking about this debate as well. I agree, that it’s so much about the heart, rather than the semantics. i appreciate your heart.

  5. Westie

    A part of encouraging neurodiversity, is in embracing the fact that there is an autism (and aspergian) community, made up of autistic people.

    My autistic son, is wonderful, both because and in spite of his autism.

  6. CaRRiE

    What ever! That is all I have to say to people that like to split hairs. I have had a person that has no children, let alone children with Autism correct me on the fact that children have Autism they are NOT Autistic. My reaction was “when you my friend have a child of your own with Autism feel free to explain it any way you please but, THESE are MY children and yes they ARE Autistic”. Nice letter by the way :)

  7. angela juso

    I think you put it perfectly and I commend you, you are right though whatever you say you will offend someone. Do you know what? I wish more teachers were as passionate as you, thank you.

  8. Alienhippy

    Thank you,
    Another post that I have LOVED reading. I SO wish you could have been my teacher.
    There is a phrase that I made for myself not long after I started blogging.
    It’s a combination of three of my posts, a song, a poem and a reflection.
    “I am Aspie-happy, I’m a multi coloured Rainbow and I turn negativity upside down!”

    Yes, I’m a Dyslexic Aspie and I claim that with pride because KNOWING I’m an Aspie and I am also Dyslexic helps me feel I belong, because for year I felt I didn’t. Calling myself an Aspie helps me to not beat myself up for not being like everyone else.

    My Mom was NT, my Dad is Autistic, both my kids are on the spectrum. My sister is married to a black man and has mixed race children, both of them also on the spectrum and one of them is Epileptic. The way I see it, to call my wonderful brother in law a man of a dark skin colour would be a bit odd. He says he is black and who am I to question that. I hate racism and I hate ignorance and pickiness is something I find very hard to cope with, I think all Aspies do. Some of us ask lots of questions and get very stuck trying to process. Some of us stop asking questions and hide who we are.

    People are people, children are children we are all unique and created to be ourselves. We all have little quirks spectrummy or not. It’s what makes us all so beautiful.
    If we all just love and accept one another for who we are then no one would have to feel isolated, rejected or an alien. No one would have to feel they don’t belong.

    I applaud you for this post and I am so glad to have found your blog.
    Love and hugs.
    Lisa. xx :)

  9. lisa chiodo | renovating italy

    Certainly the best and most touching blog I have read. I love your 3 glasses and it is such a clear way to explain to others…our little boy is 7, our little boy has Autism, and our little boy is called Luca – the light of our life! I also have only read two of your posts and so happy to have found your clear, intelligent and kind voice.
    ciao lisa

  10. alicorndreams

    You’re right. You can’t’ win. And I think that is probably the biggest shame of it all, you just can’t win. Sigh.
    I am the mother with two kids on the autism spectrum (both appear to have different degrees of aspergers). I am the proud owner of my own set of traits that appear to be very aspergers as well. I have a niece who is marvelously also on the spectrum (her aspergers is closer to classic autism but she uses language so eloquently in writing.
    I’m not sure why supporting each other has to come with ties. I’m not sure why where the modifier goes in the sentence matters. It isn’t like it is ending a sentence with a preposition… Providing support for our kidlings and each other… spreading information rather that disinformation… should be the point… as long as what you are saying isn’t deliberately derogative (like the “r” word for example).

  11. Polly M.

    This is the best answer to this kind of criticism that I have seen. I would further the debate by saying to the author of that letter that autism is not a disease, unlike cancer. We’re dealing with a condition. Therefore, her argument is moot. It is perfectly acceptable within the medical community to consider a child “autistic” and that clinical label has not been removed in the name of sensitive parents. Honestly, though, I just hope I can remember to quote your sentiment about loving your child, regardless of label. Well done.

  12. Becky

    I found your blog through a facebook link from a friend of a friend. Ah, technology. Whatever the means, though, I’m glad to have found it. I am a speech language pathologist who works with with language-impaired children. Feel free to insert whatever prepositions are required to make that term comfortable. Mostly what I do is work with children I love. Not the way their parents do certainly, but love none the less. I would love to hear how to make IEPs less intimidating. I try my best, but I can never see an IEP or your child through your eyes. What I want to convey most in an IEP is that I love your child, I want to help your child succeed, and I want to do so in a way that supports your definition of success. I also have to work within the confines of policies of my district administration, and mostly, I don’t like those confines any more than you do.

    1. gpigwhisperer

      I also found Flappiness is through Facebook. And, like Lisa, found the district administration to be too tangled up in defining our children by disabilities. After thousands of dollars being spent to change the way learning disability is defined, the definition ended up changing by moving a few words around. I stopped working in the schools. I now volunteer to help parents get IEPs in place that will actually make a difference in children’s lives. In this world of drop down, one size fits all menus, I want people to know that one size dos not fit all. That we need to use all three sets of “glasses” and not just selectively choose what fits in the school budget. Thank you for providing elegantly written and very thought provoking dialogues!

  13. Lisa

    I love everything about this post. Everything. Especially the description of the 3 glasses. Perfect. Why spend time splitting hairs over semantics? We’re all on the same team, right?

  14. Sunshine

    I think what you have to say is completely fair! I use both terms interchangeably. My son is autistic. He has a condition called autism. Doesn’t solely define him, but it’s descriptive, haha.

  15. cathykal

    Beautifully said! My kiddo couldn’t even pick a descriptor for himself due to his limited expressive language– he’s just Alex. And I’m sure he would like your thoughtful post as much as I do :)

  16. anon person

    This is called “people first” terminology. I think people without autistic children should worry about using people first terms and people with autistic children should be allowed to not worry about this political correctness since they are inundated with much more taxing worries. I say “ASD” because I am not quite comfortable with the word autistic and all the baggage it carries with the word and what the rest of the world thinks. People with ASD kids know what ASD means and so do the doctors, and as far as people outside our community I refer to my kid as whatever the thing is we are talking about… anxious, excitable, dramatic, stimmy, hyperactive, obsessive, or whatever other adjective would apply to a neurotypical child behaving in that way.

  17. Heather

    Thank you for writing this.. and the letter that led us all to you. I have two ‘autistic’ children. Shockingly, I don’t love them any less because I say they are autistic. Let’s spend the energy splitting hairs over the label on something a little more productive.

  18. angelafontenot

    What you said about wearing different eyeglasses is the part that hit home for me. As we wait for someone to diagnose our five-year-old daughter who is spirited caring soul who deals with anger issues, severe speech impairment, sensory disorder and periods of soiling we are told we don’t want to have her diagnosed with anything (childhood apraxia of speech, bipolar, high functioning autistic…)because of any stigma that might be put with it. My husband and I are at the point where we don’t care if you call ~ call it Dr. Suess disease for all we care, just tell us so we can help our child. And that is what it all boils down to, I don’t care what you or Sally-Sue want to call it, just know that we all deal with some sort of special need, we all love our child and are passionate about them, just tell me what I am fighting so that I can do all within my power to help her.

  19. Debbie

    Well said! I get sick of all the political correctness JUNK. My daughter is autistic and “has an intellectual disability”….as I was corrected BY A TEACHER who was insulted because I, the child’s parent, referred to my daughter as being mentally retarded. I grew up with a sister who had brain damage from a car accident and we always referred to her as being mentally retarded and physically handicapped. I have thought nothing of it because it was a medical diagnosis. Now I have to change how I refer to my own daughter and sister because I might offend OTHER people that the conversation is not even about?? It doesn’t bother my family members and I’ve never meant it as insulting. It was just their condition. It was a medical diagnosis! I’m trying to change that because so many ppl are so offended but…..it’s just crazy. <<<<Dang! Hope the word "crazy" doesn't offend! Maybe I should say……it's just an intellectually challenging situation! :(

  20. Julie

    Love it! As a former school nurse, I had several teachers that would say “You shouldn’t say he/she is autistic, you should use “people first language”. The funny thing to me was that these teachers did not have autistic children. I finally said “I think I’ve earned the right to describe my daughter how I want to”.

    Quite frankly as a parent with an autistic child, I am not offended at all if people refer to my daughter as autistic. The wording just doesn’t matter to me. She was diagnosed over 9 years ago and I was told “Your daughter is autistic”. Just in the past couple of years has there been this huge push to change our language. Why is that?

    Thank you so much for a wonderfully written response. I personally feel if someone wants to use “people first” language that is fine, but don’t expect everyone else to feel as passionately about it. I have way too many other things to worry about, like getting my daughter who is turning 13 next week, the services she needs.

    So glad you are sharing!

  21. Celeste Hardman-Monroe

    Another phrase is “on the spectrum” – some prefer that I’ve noticed. I don’t care either way. My son…he is what he is, no matter how you put it. I don’t want to change all of his odd behaviors…just some. :>) I want him to still be unique – to be who he is. After YEARS of searching and fighting with doctors and his school, I am just thrilled to finally have a term to associate with the behaviors that cause him problems. If we called it “Purpleistic” or “a Purple child”, I’d still be just as thrilled!

  22. Mel

    You are a VERY talented writer!! I admit that I prefer “child with autism”….partially because I think the word autistic sounds harsh. I don’t know why really!! Is it my own heart that I am protecting instead of being offended by the “word” or, more importantly, how the “word” reflects upon my children (yes I have twins!). Is it my own hang up? Hmmmmm…..

    1. Caz Leitch

      Actually Mel….some people have thought that i have said ‘artistic’ when i have said ‘autistic’….. i sometimes dont correct them because my daughter is very artistic when i think about it! Hope that makes the term a little easier to handle? 😉

  23. Dottie Angelo

    why do we as a group of special parents feel the need to critize others, have we not had enough of that? should we not just listen and feel the words of each and every one of us, in the individual aspect it is said, the meaning of the words, and not just the words, we should be helping our group, instead of tearing at each other, and UNDERSTAND !!!!

    1. Caz Leitch

      WELL SAID DOTTIE!!!! I have tried to express that when i see people verbally sparring with each other on support sites. I just dont understand how we could aggressively critisize each other when we are all more or less on the same ASD ‘love’ boat!
      As for Leigh’s article, i love how you put it…as always! You are a wonderful writer!
      I am a member of Autism friends on facebook. Autism seems to have become ‘ASD’ and ‘little cherubs’ etc. on there, and without realising it, I have adopted the terms as well! Not because of political correctness, but because of habit and because ASD rolls off my tongue quicker. As for little Cherub, i think my daughter seems to have grown a tad tall for that, but i will still use it sometimes…..
      As a Bipolar (person with bipolar…if anyone wants to be politically correct when reading this. lol), my mouth and brain just dont have time to think of the exact correct way of saying something. As long as its not nasty, i will say it.
      Besides, i kind of find political correctness a little offensive sometimes. (I will try to describe this the best way that i can); it expresses to me that there are people out there who cannot say the true label because it possibly ‘disgusts’ them to say it……i hope you sort of understand what i’m saying there? It was a little tricky trying to explain it! lol. :-)

  24. Barbara Gini

    Great post! I am so glad to hear this from a spectrum parent. As a recreational program consultant & educator, I also feel uncomforatble adding prespositions & ‘extra words’ where they are not needed, however I sometimes feel like I am walking on eggs and find myself using ‘people first’ language for fear of offending someone. While I am not an advocate of teasing, rude or vulgar name calling, I personally, I think that these conditions that we call ‘labels’ can be helpful in knowing how to better teach that child (or adult). The label does not define them, it only tells us a bit about that person and how to interact with them. It does not make them any less loved. I also think that in many cases, tho overuse of political correctness encourages a sense of helplessness and entitlement rather than self-empowerment. I love your blog-also found you through Facebook. You have a great message and important insights to share-I hope you plan to continue to write! : )

  25. Patti Monk

    I’m a Dyslexic Agnostic Insomniac. I lie awake at night and wonder if there really is a Dog? No, but seriously, folks, I have Asperger’s Syndrome and my grandson has Autism; therefore he is Autistic. If he is sick and running a fever, he is feverish. He has a fever. He is feverish. So what? There is no difference.

  26. Roy Merideth

    Well written and so very spot on! I’m new to your blog but I think I’m going to be adding you to my favorites and checking in often. My wife is a Pre-K speech language pathologist and she works with special needs children daily. In my humble opinion, how these children are referenced (autistic child or child with autism) is irrelevant. What’s important is how they are treated and loved. Period. Wasting time and energy on semantic issues is like this does nothing to help the child. The child should be the focus, not the label. As a former principal, I referenced the diagnosis so that I could better understand the needs of the child. I did not spend a single second worrying about the semantic designation. I’ll be adding you to my blog roll at http://www.therecoveringprincipal.blogspot.com. Keep on being who you are!

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Thanks, Roy. I finally got a chance this weekend to check out your blog as well. I’m going to add yours to my category related to education. It’s nice to hear from someone who knows and isn’t afraid to say it.

      And, yes, I agree with your statement that gifted education in this country is abysmal. Our 4 year old is showing a few signs of giftedness, and it has me worried. For now, we’re keeping her in private school…

  27. ayn colsh

    Beautifully said! I’m an inclusion preschool teacher and the proud mom of an Aspie and I think labels are just words. My daughter is 13 and been labeled several different things in school (Autistic/ADHD/ Asperger’s/SID/ PDD/etc., etc. etc., as the years have passed. We really don’t care what they “label” her, as long as she is getting what she needs to be successful in school and life!

    I’ll definitely come back to read more!

  28. warhead13

    One could infer from the disgruntled reader, that they have mastered the art (science?) of raising special needs children since they have nothing better to do than mince words. Actually, I’m sorry; I’m assuming that the disgruntled reader has special needs children or knows someone with them. Why else would they read this blog? There I go again; making assumptions and incorrectly punctuating my sentences… If the disgruntled person has special needs children and has time to nit pick word choice I would like for them to share their secrets.

  29. kaybratt

    I just found your blog via a very good friend of a special needs child. I love your candid writing and this specific post rang a bell with me. As an author of a very widely read memoir of my time working in an orphanage with many children of special needs–in China where the stories can be enlightening and the discrimination worse, I tried to navigate the world of politically correct terms for the conditions of the children I worked with. I have had some who support me and some who wanted to hang me on a flagpole by my toes, cover me in syrup and let the ants loose. For a while it really affected me when someone would scold me for my incorrect terminology. I found I also could not win! To soothe my hurt feelings, over the years many supporters have stepped up and made it known that ‘they’ get that I may not be overly educated about terms, words and conditions, but I DO have a heart for advocating for children–no matter what label people slap on them. Love your blog, adding it to my favorites.

    Kay Bratt
    http://www.kaybratt.com

  30. tanoshinde

    Depending upon the diagnostician (lay or professional), I ‘have’ either high-functioning autism or Asperger’s syndrome (to whit, I also possess excellent coping mechanisms, thanks largely to caring teachers!) — but usually, when it makes sense to mention it, I usually just call myself ‘autistic.’ Frankly, ‘…a person/college student/cyclist/whatever-with-autism’ is just too wordy for me :)

    I think this post is awesome, and it probably took a lot of courage to put it out there.

    Thank you!

    1. Profile photo of FlappinessIsFlappinessIs Post author

      You have good insight. I actually called my friend Christy and insisted she tell me if I was crazy before posting it. LOL

      Thanks for reading and commenting.

  31. dinnerwithdelores

    You’re probably going to think I’m either crazy or a jerk, but I literally laughed out loud when I read the first paragraph of your post here (after the Disgruntled Reader’s part). I’m not a jerk (maybe crazy) but let me explain.

    I suffered a spinal cord injury last January. I had spinal surgery, and now use crutches to walk. I tend to use the phrase “I am disabled” because…well…I AM! I used to be okay, now I’m not. So I am disabled.

    But I was told by a caring relative that using this phrase makes it sound like my disability is part of me (isn’t it?) and that its permanent (probably is) so I should say “I have a disability”.

    I started using that phrase, and was corrected by an equally caring friend who told me that using this phrasing makes it sound like I am temporarily disabled (possibly…who knows?) and that is something separate from me (how is that possible?) so I should say that I am disabled.

    Basically, you can’t win, there it is, there’s no debating it, and you can’t please anyone! lol

    1. Profile photo of FlappinessIsFlappinessIs Post author

      I don’t think you’re a jerk or crazy at all. It’s funny how people who aren’t personally affected by a situation are all too willing to theorize how you should perceive it. I think if you have it, you get to call it whatever you want to!

      I’m glad that you do have both mobility and your sense of humor after such a serious injury!

      Thanks!

    2. WonderWoman

      LOL!!!! This comment was the ice cream sundae with the cherry on top ! Or is it the cherry on top of the ice cream sundae? ??? Tomato / ToMahToe. Potato / PoTahToe. Do other language groups have this much discussion over how to correctly describe something?

      To Dinnerwithdelores: Hope you continue your ‘disabled’ life with your ‘enabling’ humor. This is probably not a PC comment to you, but I enjoyed your perpective.

      To FlappinessIs: Thank you for starting this blog. I will be a frequent reading as I am just entering this world of utter ‘flappiness’. All my best to you.

  32. Tiffany E

    How refreshing! I came across this blog and am in love. :-) I have grown up in a world of disability, my mom was disabled, I’m dsylexic, and my son is autistic. I now work in the world of disability as a Rehabilitation Counselor. I have to say that at first I was so worried about PC terminology when really, who cares?!?!?! My clients refer to themselves as addicts, schizophrenics, depressed, autistic, disabled. I ask, “what’s your disability” and they reply, “I’m autistic.” or “I’m depressed”. I think that preference should be decided by the person with the disability.

    No matter how you put it, “my son has autism, my son is autistic, my autistic son”, it only truly becomes insulting if said in a derrogatory fashion such as, “Did you see that?! He must be autistic because he acts so wierd.” Oh, my favorite (insert sarcasm) is when someone says, “he must be retarded!” Grrr!

    How about we stop worrrying about semantics and start worrying about the lack of compassion? I will tell you that I usually introduce my son, “This is my son Sebastian, he has autism.” But when I’m in public and someone decides to stare and make their rude comments about my “bratty child”, I tend to get heated and say something like, “He’s autistic! You got a problem?!?!”

    I applaude you as you have much more tolerance than I do.

  33. skm317

    Please keep blogging!!! I love to read the things you write! You make me feel and you inspire me!!! I don’t really care what you call it, but i do know that my son has autism, he is autistic! Whoever has this issue must not be very truthful with themselves, or in some stage of denial. If your child HAS AUTISM, they ARE autistic. How can you seperate the 2? By using the eyeglass metaphor like you described. and that you cannot seperate the one from the others. I totally GET IT. Just my opinion, but I think your blogs are awesome and I hope you will continue to write on! :)

  34. Katie

    I agree with both sides because I think just like our children each circumstance is different. When speaking about him to someone who has a child with autism or another disorder I may use the word autistic but with others who do not I try and stay away from it. They already dont have an understanding of the Autism world and to me when you say Autistic they visualize a 15 year old boy rocking back and forth on the floor. So I normally say he has autism, it has caused speech delays…etc. That way they dont sum it up themselves. Alot of these people dont know any better and “autistic” is defining to them WHAT, not WHO our kids are. I do think that this post was very well written and I wish that we didn’t have to be so specific but sometimes that is what the world calls for.

  35. Stephanie

    Thanks for this post! I was actually just pondering this one last night. I refer to my son as Autistic. I’ve gotten negativity with that also and was just debating what to put in my blog headline when describing him (I’m renovating a bit after losing my son to cancer. For the answer to the cancer question, he was a “cancer kid”, as all cancer parents affectionately refer them to). I think I’ll be proudly putting Autistic. :)

    1. Profile photo of FlappinessIsFlappinessIs Post author

      I can’t believe anyone would dare give you negativity after everything you have been through. You have earned the right to call it whatever you want. My heart goes out to you, Stephanie. I’m putting your blog on my blogroll and will be following it. Hugs. :)

      1. Stephanie

        Thank you! You wouldn’t believe the things that have been said to me. That I use my situation for pity, for attention or for money. As if I enjoy watching my child suffer through chemo and die, or watch my Autistic son not get the therapy and routine he needs as he’s bounced around with us to hospitals and other places. He might just be the most versitile Autistic child I know! Though in each situation, we quicky developed routines and he has been amazing considering the life he has been brought into. Now I struggle with explaining the non-literal, non-visual aspect of having a brother in Heaven. Thank goodness he has his baby brother to bond with. I thought he was put on this earth to save Tyler, being a perfect bone marrow (cord blood) match. Instead now I’m realizing his real purpose was to help Dawson through all this.

  36. Regina Harris

    I asked my 13-year-old Aspie about his preferences here. It only makes sense to ask the actual child in question when he’s old enough and verbal enough to share his opinion, right?

    So he looked in my general direction, paused for a moment, and then quite succinctly said “Uh, whatever. Who cares?”

    And there you have it.

  37. Brigitte Peters

    Very well said.I might have written something very similar myself. I have an aspie cousin, whom I love dearly. After raising four childtrn who were classified as ‘gifted’, my husband and I adopted four more. When I talk about my kids, it is not necessary to use adjectves to have them be ‘my/our’ kids. We also live with a variety of diagosis; ‘Deaf/blind (CVI)with autidm and developmentsl delay’ ; ‘borderline retarded with ADD’ ; ’emotionally disturbed with minimal brain damage and LD’; and the youngest who has autism or is autistic or however else one might describe my sweet 17 year old. They are my kids. People ask me how old they are, and I might answer: “well, physically, he is 23, or 22, or 20, or 17”. Knowing ‘ages’ only gives more opportunity for ‘judging’ based on how they ‘might’be, but for the diagnosis. These young men are my kids. They are worthy, loveable and loved, they are who they are without needing to be anything different. A diagnosis is just that, it doesn’t change who they are. I introduce my kids as “this is my son, Jesse, ( or Caleb, or Ricky or Jon)”. For Jesse, I would also add ASL to the introduction and encourage him to sign ‘hi’, but I don’t introduce the person of Jesse as ‘this is Deaf and poor vision autistic Jesse’. If someone needs to know, for whatever reason, then I might explain more, but I do get tired of ‘explaining’ my kids. Basically, you and I seem to be very much on the same page. Some of my bio kids have ‘off the chart, mensa worthy’ high IQ. I never felt compelled to introduce any of them as ‘genius. . .So and so and so’, in some ways, rhe high IQ ‘normal’ kids posed greater challenges than do those with less to ‘measure’. I have 8 kids. I love them all.

  38. Laura Henretty

    What a perfect response! I salute you!! My 2 year old son is autistic/a child with autism/child battling autism (delete as appropriate) and I LOVE your 3 sets of glasses analogy!!
    My view is this, if people (especially those without a child with autism) spent less time pontificating on how we should refer to them and more time accepting them as they are and stopped trying to make them into what THEY perceive to be ‘normal’ then life would be MUCH easier for our autistic children!!

  39. Lisa

    I’ve always said “You can call my son a purple elephant if it gets him more services/therapies that will help him to succeed and be healthy and productive” and I mean it!

    As a teacher…and a mother of an Autie, it isn’t the label, or the way in which the label is applied, it is the LOVE, the education, the work, the commitment…etc.

    Well written, expressed, said. Thank you!

  40. Lyndsy

    Hahaha people with insulin resistance… Sorry. I don’t think that you Will come out not a winner, you see both sides, those are winners. People who can only see one side are the ones with problems. We all have an opinion and who are we to say when someones is incorrect? Well said.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Exactly. I see both sides of a lot of things. Don’t get me wrong. I hold strong convictions. But, even then, I can understand why someone doesn’t agree with me. And I don’t have to be angry with them for it. Even with politics, we have to vilify people. I love my friends whose politics I don’t share. I happen to think they are woefully mistaken – lol – but good people nevertheless! :)

  41. ted

    i LOVE your blog! just found it thru someone on my facebook page. i don’t think…no, i >know< that i would not have been nearly as diplomatic in my response as you were, but being that you are the "hostess" here, i realize that you must maintain a certain level of decorum in your writing. my response would've been something more along the lines of "look, you anal retentive wench, you can throw the words in a blender and mix them around any which way you like – it doesn't change my kid's plight by even a thousandth of a percent! so get over yourself and TRY to find something PRODUCTIVE to do with your pathetic life". well, sorry, but that's just me. i loathe people like that and have zero tolerance for faux intellectualism. for anyone who's wondering, i'm a full time single dad of an autistic teenage son.

    p.s. yes, i know that it's "through" and not "thru". and yes, my caps button does work. thankfully, i'm not a teacher :-)

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Jennifer, you are too kind. So kind in your commentary that I just may be forced to print out your replies and carry them with me everywhere for all the times when I can’t find the right words and feel stupid. I have always remembered that wonderful Designing Women episode in which Suzanne Suzanne Sugarbaker wishes that she had a music box that would play applause every time you opened it for moments when you really need it. Your comments would serve the same purpose. Thank you! :)

  42. Cathey Huey Klasek

    Thank you for your post. I asked my sister, the beautifully talented mother of my wonderfully unique niece, which phrase she preferred. Her response was “She is who she is.” As a person with insulin resistance (or islet cells that hate me!) I am a diabetic. It’s not all that I am, but it is part of all that I am in that it effects everything about me. Thank you for eloquently expressing the idea.

    1. Carmen McLellan

      “It’s not all that I am, but it is part of all that I am in that it effects everything about me.”
      You have some claim to eloquence yourself, Cathey.
      The hardest part of parenting my ASD diagnosed son is trying to find the parts that I can manage as a parent of a 4 year old…or the parts that are related to being a parent of an autistic child…or the parts that are just being Ewan’s mom.

      I am not a fan of overdoing PC language. as long as you are not deliberately derogatory or offensive, people can and should mind their own tongues. A rather haughty young parent in our parent/child swim class reacted upon learning of Ewan’s dx with “Your son has AUTISM? are you sure he should be in a class with other children without autism?” she made it sound like he had herpes. or headlice. or a record of assault.

      Ewan is autistic. Ewan has Autism. Ewan is male. Ewan is a boy. Ewan is amazing. Ewan amazes me. Put it how you want, but watch your tone. He is still Ewan. My son. Himself.

  43. serens

    Isn’t insistance on one right way to do things and firmly sticking to it a characteristic/symptom/hallmark of autism? Black and white thinking?

    And yet I have autism, and even I know enough to say “cool it!” After all, diabetic simply describes a person who has diabetes, right? So I hope that “reader” went and complained in all those diabetic blogs as well for being insensitive.

    Also, if “canceristic” was a word, then maybe that argument would have been valid. Instead I’m too distracted by that word to really care about the rest of what they say. Then again, I’m rather black and white when it comes to what is a word. It’s only a word if I think it’s funny. 😛

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Serena, I like the way you think. And not because you agree with something I said. I just like your thinking. That kind of unique thinking being expressed is what is amazing and cool about autism. I just wish we could keep all the cool stuff about it and cure all the stuff that’s painful.

      Thanks for sharing. :)

  44. IVIRGINion

    Awesome post, I just so happen to have stumbled across your site and I really enjoyed this post.

    I have a child that has a hearing loss… the only thing I say to her teachers is to treat her like a 4 year old girl first and then add in that she is partially deaf… That is only because she will walk into the classroom and the teacher will stop what she is doing and get ALL in her FACE as if she is deaf and dumb… Which she is not, she is still a “typically” developing child, with a slight delay because it took her 3 years to realize that her hearing aids are her friend and not an enemy… Which she calls her “Ears!”

    Either way that annoyed the crap out of me to no ends because I think some people still feel that a deaf child is also a dumb child… AHHHH!

    Anyways, Thanks for your post and really who cares what one calls their child, it’s their child and they have that choice to do that… :-)

  45. Blogbiscuit

    OH I LOVE THIS! I will go and find flappiness on facebook and share it with autism mums. well done you for saying what you said to the “disgruntled reader” ok everybody has an opinion but at the end of the day i love your post rather than theirs.

    another thing i will say is …. this is your blog, you write what you believe in, what you love about what you wish, nobody should tell you any different.

    good luck and hugs to all you mums xx

    ps i dont have a child on the spectrum although my now late sister did have autistic tendencies but i do know lovely parents with beautiful children with autism well done for freshly pressed

    1. Profile photo of FlappinessIsFlappinessIs Post author

      You don’t have to have an ASD child to visit with us! I have found in just a few short weeks that there is no more welcoming group of people than that of the special needs online community. I think I speak for everyone when I say we are happy when people are curious and want to interact and know more. Thanks so much. :)

  46. Thick-Skinned Robot

    I have to say I’m more inclined to agree with the “disgruntled reader,” but can also understand your side of things. Through schooling and personal experiences I’ve learned that it’s always safer to go with “child with __” or “child who has __.” We live in a world where political correctness is a big thing. People, some at least, try their best not to offend others and therefore will call them what is socially acceptable or nicer. It’s simply better to err on the safe side.

    But, I link your point of view to that of African American (politically correct term) and black (offensive term for some) people, who are the ones typically accepted to use the “N” word. Anyone who isn’t part of that population and uses the word, is likely to receive backlash. Well, you as a mother of a child with autism have the right to describe your child how ever it is you want.

    At the end of the day, what matters is the treatment we give children with special needs and not necessarily what we refer to them as.

    1. Kim Osburn

      Equating the use of the term “autistic” with a racial slur is ridiculous. Most neurotypical people who use the term “autistic” mean no disrespect to the person with autism. On the contrary, non-black people who use the “N word” intend to demean black people.

  47. Ann Burt

    As the mother of an autistic 21 year old, let me say that I’m sick to death of the politically correct police. I have two normal “neurotypical” kids and 1 ASD. People want to focus on the wrong issues. I don’t care what you call it, I don’t care what the current in vogue words are to describe whatever condition, disease, etc., because you focus on semantics doesn’t make you emphathetic, or mean you understand. I was answering a question of an acquaintance and she climbed all over me when I used the word normal. Guess what? Neurotypical is the feel good way of saying normal. Guess what else? Her two lovey children are normal, and she’s lecturing me. Unbelievable.

  48. Andrea Gibb

    I am an educator in a professional college health provider program and our students are taught the “politically correct” way to describe an autistic person which is “a person with autism.” This is probably why you received a disagreeable response to your original article. This just may be what that person was taught, but in my opinion, you are the one with the autistic child so you may rightfully use whatever descriptor you choose.

  49. aefountain

    Beautifully written. I love the post.

    I have been thinking about this a lot recently. What other ailment (for a better word) out there is called something but based on a whole bunch of other things?

    Autism seems to be the global word for a bunch of underlying issues that need addressed, i.e. leaky gut or weak eye contact or low muscle-tone, etc.

    is there another syndrome that is really a bunch of other things, wrapped up in a bow and titled something else?

  50. The Picture in My Head

    I came across your “Silencing Ourselves” blog on Autism Speaks. This is your 3rd blog I’ve read, and you have such an amazing way of saying what you want, and making the point without demeaning someone. Thank you for putting this out there. I too agree that political correctness is way out of hand. We can all make sure to be respectful in the words we use with others, but the intent behind what is said, has much more of an impact. I look forward to reading your blog!

    1. Profile photo of FlappinessIsFlappinessIs Post author

      How flattering! You just made one of those comments that authors like to put on blurbs for their books. I’m not one of those writers who can dismiss the good opinion of others. I tend to worry about what I’m writing in my posts to the point of being somewhat neurotic. Thanks for that. Most appreciated. :)

  51. fullpakej

    I have a teenage son who is ‘mildly autistic’. I have been alone with this battle for as long as i have had him. I adopted him at 2 and was told that he would never be able to attend a regular school.My answer was ‘okay, i will be okay with that-but i wont accept that decision now’ everyone told me i was setting myself up for a fall, that i would damage him by pushing him to hard,etc. No one believed that it didnt matter how far this beautiful child ‘went’ just that he have the chance to go as far as he could. He started high school this year, he is 14. Because he sees things differently than most kids, we never really know when he will have found the end of his “went”. Has it been hard? I would have to say yes, but the hardest thing of all has been the constant fight for him to have the right to live his life his way. We joke about going to see those ‘specialists’ who warned me about what i would be ‘getting into’ when we choose each other. If i could say anything to those people who are not personally involved with an autistic child i would tell them about a comment a good friend of mine used to make–he would tell people ” i used to be an expert in child rearing, then i had a son…now i’m only an expert in raising girls” we have alot of ‘experts’ on autistic children. Parents, yes there are lows, i am having one now, bit the highs are so worth it. I am so glad to have been directed to this site and i know i will be visiting often.

  52. christiekiley

    Thank you providing such a well thought out and articulate response to this issue. I am an OT and have often struggled within myself about the words I use in reference to children on the spectrum. Experience has taught me that, at the end of the day, it is up to the people who are close to the child (and the child him/herself) to determine the words used to describe him/her. And they are just that — words. They do not change the child or the commitment and love the family has for the child. Let’s stop squabbling over the little things and stay focused on the bigger picture.

    Love your blog!

  53. purpleaspie

    I usually refer to myself as either an Aspie or an autistic person, and when I write about autism I normally say “autistic person.” I recently was given the opportunity to contribute some of my writing to an academic journal about autism. But I was informed that anywhere I had written “autistic person” it would be replaced in the editing process with “person with autism.” When I objected to this, the compromise I was offered was, “You can refer to yourself as an autistic person, but you can’t refer to ‘autistic people’ as a whole. If you refer to another specific person as autistic, you must have written permission from that person that you can show us.”

  54. Hannah

    Mothers. Let’s simply: Not Care.
    Let It Go.
    Move on, without needing to Respond.
    To people who want to be critical and Mean or find offense where there Is None.
    :)

  55. tagAught

    *nods thoughtfully* This *is* a hot topic, and I agree that it’s a shame (aka ridiculous, but we’re not supposed to say that!). I don’t know if part of it is that I don’t understand why people are doing this *because* I’m on the spectrum, or what.

    Personally, I call myself: “an Aspie”, “someone with Aspergers” (or “I have… etc.”), “someone with ASD”, “an autistic”, “someone with autism”, “someone on the spectrum” pretty much interchangeably. With the changes coming to the DSM (when DSM V gets published in May), it’s all going to be combined into the spectrum anyway.

    On the other hand, there’s the fact that I work for a cross-disability organization, and one of the things they emphasize is “people first” terminology. I can intellectually see the sense in that, simply because I’ve noticed that people tend to get different impressions from “autistic” and “a person with autism”… nevermind that they’re the same thing. *shrugs* I don’t fully understand it, despite having a huge vocab and understanding a lot of the subtleties of language use.

    I think it might be partially a result of the fact that the disability organizations that one hears of most – the strident advocators – feel that “people first” language will help break down the social barriers between people with disabilities and people without. It’s one reason the UN’s “Convention of Rights for Persons with Disabilities” uses “people first” language.

    So when I talk about cross-disability stuff, I use “people with disabilities”. When I talk about myself, or my friends whom I know don’t care about their “label”, I use whatever seems best at the time – though more and more I’ve been using ASD and “on the spectrum”, as that’s a broader category.

    Anyway, once again, my 2 dollars worth!

    😉 tagAught

  56. Bobbi Sheahan

    I am now wondering whether I should refer to myself as “a person with appreciation for your your writing” or simply a fan. 😀
    <3

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