*
“…One thing bugged me and I don’t see how it still happens especially in this tight knit community. This is referring to a person with autism as autistic (I.e. my autistic daughter/son/brother/etc.). One big step we could all make as a whole is to utilize person first language a person with …(insert any disability)… as that is just a part of the person and their entire identity. If we want to stop the spread of insults and slurs based on a disability then we all need to use positive person first language as well.”
~ a comment from a therapist on the Autism Speaks Facebook page in reference to my last post
~
If you were to sit down and read Diary from its inception back in 2008, I’m sure that you’d notice some pretty dramatic changes. For one thing, the writing itself is a whole lot less formal than it used to be. I used to think I was writing a college essay every time that I sat down in front of the computer. “For one thing” would have been, oh, I don’t know, “Firstly …” But there are far bigger differences too. Many of the words that I use and the way that I use them have changed. And the change in verbiage is reflective of a change – an evolution really – in my understanding of autism.
When Brooke was first diagnosed, I bristled at the word ‘autistic’ when it was assigned to her in conversation. I actually found it offensive. “Person first!” I would shout in my head as I calmly responded, “my daughter HAS autism,” emphatically yet (theoretically) politely ‘correcting’ the perceived gaffe.
And then, somewhere along the line, I read –> THIS <–.
And something shifted. I had never considered the words nor what they represented from the inside out. Reading Jim’s words turned the whole conversation upside down. The switch had been tripped on a life-changing evolution in my thinking.
.
It changed me – or more accurately, it began a process of changing me. I started to think differently. I started to test it out – to feel it in my mouth – autistic. I started to bristle less when I heard it. But didn’t adopt it completely. I wasn’t ready. And looking back, I can only conclude that I didn’t because I wasn’t ready to accept that autism was a PART of my kid.
.
It is.
.
As my friend,
John Robison points out in his book
Be Different, when we talk about people
having something, it’s something bad.
He has cancer. He has a cold. He has the flu. When was the last time you heard someone say, “He has intelligence?” or “Wow, she really has giftedness and talentedness?”
.
So when we say, “has autism” aren’t we conveying a message to our kid that what they “have” ain’t good?
.
I come back so often to John’s words about the demonization of autism. They’ve made their way into heaven knows how many posts here over time. But there’s a reason for that.
.
For many of us on the spectrum, a parent’s stated quest to ‘cure’ autism feels sort of like a divorced parent constantly criticizing her ex in front of us kids. As that kid, I know I am half Dad and half Mom. So when Mom tells me Dad is no good, what is she saying about me?
If much of my life is defined by autism, and autism is a terrible thing, how do you think I will feel about myself? I ended up in special classes because I am autistic. I flunked out because I am autistic. I already know I am disadvantaged with respect to others who are not autistic. I don’t need more stuff to feel bad about.
There is nothing wrong with wanting to take away a disability. That’s a great goal and one that I fully support. What’s wrong is making something out to be ‘bad’ and then failing to take it away; leaving us with the ‘bad’ irrevocably bonded to us.
Moral judgement has no place in the world of remediating disability.
.
To the autistic adults that I know, and I have the privilege of knowing a lot of autistic adults, the idea that their autism could somehow be separate from their identity, removable, any less than an integral part of how they see and smell and taste and hear – and function in – the world is patently absurd. To one friend that I spoke with about the
50 Cent gaffe, the idea that the word itself could be an insult is laughable because he – and the autistic community of which he is a part – have claimed it – it’s theirs. Let anyone else use it as they will. It can’t hurt unless they allow it to.
.
.
I am grateful to Jim and John and Lydia for giving me the language to ask, “So when you talk about other parts of your identity, do you say that you have Jewishness? Catholicness? Gayness?”
.
Because I have had the chance to explore and digest their perspectives, I now frame the conversation around the question, “If you are referred to as Jewish or Catholic, does that mean that the speaker who has described you as such has pin-holed your entire identity into your religious preference? If someone says ‘He’s gay’ have they somehow negated the fact that he also plays a mean guitar? Of course not.
.
So just as one can be described as Jewish or Catholic or gay without taking away from any of the other possible descriptors, they can also be described as autistic and still be thousands of other things too. The word doesn’t negate the rest of a human being, it simply acknowledges and validates the reality of that person’s experience. Yes, I bolded that on purpose. Because for me, it’s the crux of this whole messy ball of wax.
.
When
Liz Feld and I sat down to talk the other day, this topic came up. We laughed that we’d recently begun to hear ‘he is
with autism’. We agreed that it must have been someone’s idea of a compromise, but all we could think of upon hearing it was ‘he is with child’. If you really want neutrality, might I respectfully suggest, as
Lydia does on her blog, that you go with ‘on the autism spectrum.’ It isn’t exactly personal, but at least it doesn’t sound like your kid has a bun in the oven.
.
Since I know I’ve got some new readers joining in, I feel like I have to say the following. My thoughts here are just that – MY thoughts. They are, as everything here always is, based on MY experience with MY kid and in the context of the people in OUR world. I am not trying to tell anyone else how they should refer to their child, and I’d certainly never dream of telling anyone how they should describe themselves. These are intensely personal decisions. Decisions that I hope to God my daughter soon has the capacity to make for herself. In the meantime, I have to follow my gut to find the language that I think is the most respectful of who she is. Yeah, I bolded that too.
.
My girl will undoubtedly face ignorance as she steps further into the world. When she does, I want her armed with an impenetrable wall of self-esteem. Of belief that just as there are serious challenges in her autism, there are also gifts – her incredible memory, her uncanny ability to repeat what she’s heard or read, her pitch-perfect imitation of accents – and so much more we will have the joy of watching emerge as she grows.
.
When someone spits ‘autism’ at her as a dirty word, I want her to turn it back on them, framed as her own. “Yes, I’m autistic. So? I’m damned proud of it.'” Heck, she could even throw in, ‘I’m sorry that you’re not, but that’s not my problem,” for good measure. And so too, she can use it to connect with others like herself, to be a part of a community of understanding and support and pride. And thank God that community exists and awaits her – forged and fostered by adults – adults who, in my experience, choose to be called autistic.
.
~
Ed note ~ To those of you who are coming here for the first time, welcome. I urge you, particularly if you are new to the world of autism, to read Welcome to the Club and D-Day.
.
~
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a diary of a mom 
“Yes, I’m autistic. So? I’m damn proud of it.’” Heck, she could even throw in, ‘I’m sorry that you’re not, but that’s not my problem,”
You have given me the hope that one day my baby girl will have that strength of character and self-worth to say such.
Thank you, Love.
xo
I absolutely Love this comment and agree completely. I would so love to hear my son say, “Im sorry your not.” In fact I can envision him saying that quite well, and am now almost waiting for it to happen.
This is wonderful and how I feel, too. My son Max is smart, he is curious, he is beautiful, and he IS autistic. End stop. It is part of who he is, not separate. I cannot imagine him in any other way. Thanks again!
Perfectly written. The same folks have also inspired a change in my language as well. I totally get it and I appreciate you sharing your thought process. And, I totally agree with Rachel. I am ever so hopeful that my baby boy will one day take on and then emulate the tremendous pride, tenacity, positivity, and strength that our team bathes him in on a daily basis. Love this post!
Loved this! I couldn’t agree more that autism is part of who my son is, and he should never be ashamed of it. We also choose to refer to him using the adjective “autistic”. Just as we use the adjectives “intelligent” and “curious”. It’s who he is…and even with the challenges and struggles, there is beauty and amazement. He’s kind of my hero. Thank you…I am in your court here.
So very well said!! (as always!). My eight year old calls it “my autism” and he is so proud of it. The idea that the autism could be separated from any of my children is completely absurd. Thanks for hitting the nail on the head again! I am also so happy that this adult community is out there waiting for my kids when they are ready. They are amazing.
-Erin, proud mama of three autistic children 🙂
I’ve probably told you this before (sorry if I have!)
I refer to myself as autistic because autism is as much a part of me as my toes and the colour of my hair. It can’t be changed or removed and I wouldn’t want it to be. To me, autism is only a bad thing if you allow it to be so (my profoundly autistic son does have some extreme issues because of his autism, but he is also a wonderful human being who is full of smiles and magic because of it).
For myself, I would not be any other way – although I would have liked to have had the understanding and support as a child that my son recieves today. I am completely individual and unique; there is nobody else anywhere on this planet like me. I stand out in a mostly positive way.
I love being Spock’s Granddaughter 😀
THIS. Thank you.
Well said! You are absolutely right in every way!
Now I must remind you, that yesterday you said you were profoundly tired. It’s Saturday, Jess! Take time to rest this weekend. This is your Mother speaking!
Love you,
Mom
Lol.
*hangs head, pretends to listen* says, ‘Yes, Mom.’
Don’t be fresh! Go to your room!
Love you,
Mom
I was thinking the same thing, Jess’ mom! We never stop being a mom, eh?
You inspire me Jess. Thank you. I’m still not ready with “autistic” but I love that you make me think about why that is. I’ll lean more towards “on the spectrum” and use that as a baby step. Although I do know you’re nit promoting, just sharing. :). Thx for all the links!
It will come:)
5 years ago after a 4 1/2 year rollercoaster ride (mostly mine!) I received the double whammy of a diagnosis for my precious, long awaited (I was 34!) baby boy & the “oh yea, by the way, hasn’t (husband) mentioned he was diagnosed with Autism at age 3?” (from MIL). Talk about shock waves! I cried, I mourned, I raged (at myself) & staggered forward….saying minimally “well, there are “issues”….now when speaking to those who are not aware I will first explain the triggers (it’s loud, too many ppl, etc) and then “just so you know he (son &/or husband) is HF (High Functioning) Autistic”. 🙂
This is very interesting as I was just thinking on this over the past few days and I’ve been stuck. See, I’ve been unable to identify with what you just put into words so beautifully for me. Over on my FB page I made an image and it says, “Autism does not define me, my child or my friends. We define ourselves.” It was at that point where I got stuck because I was wondering, how do I want to be defined and how do I want my son defined—and you nailed it for me. And from the bottom of my heart, I thank you for that.
To me, the most important part of this post is how you so eloquently explained your evolution to your use of “autistic”, because it’s a journey that so many of us parents make. You start with the diagnosis of autism and what that means (depending on who has explained it to you) and begin to move towards the understanding that it’s part of our children and what makes them amazing human beings. In my own discussions and writings, I have moved from “with autism” to “on the autism spectrum” and, thanks to reading the words of autistic adults, now use “autistic” when talking about my boys.
Like Rachel, I too look forward to the day when my boys talk proudly about the autistic traits that make them so special.
Along these lines, I think it’s time to change the tag line on my own blog…
you just made me realize i should check my ‘about’ page! 🙂
I have been through the same language changes as you. When my son was first diagnosed, I read all these blogs and articles (written by parents of autistic kids) that urged the use of people first language. Interestingly, it was when I started reading blogs and articles written by adults and teens on the spectrum that I realized how people first language could be perceived as a negative thing. It made total sense.
Anyway, I have been slowly shifting how I refer to Danny and his autism and I still have those who criticize my word choice. But it’s always NT parents, it’s never autistic people who have a problem with it.
Anyway, I have been slowly shifting how I refer to Danny and his autism and I still have those who criticize my word choice. But it’s always NT parents, it’s never autistic people who have a problem with it.
exactly my experience. and since my child is not going to grow up to be an NT parent, but an autistic adult, i think it makes a lot more sense to take my cues from the latter.
I’m *so* glad to see a well-written rebuttal to all the person-first language. I don’t feel strongly about the specific terms one way or another anymore, but there was a time I hated them all – “autistic” seemed reductive, “person with autism” seemed comically pc.
Ultimately, people have to figure out what language reflects their own reality. The important thing, of course, is to be respectful of the humanity and individuality and needs of our children (and of all children), whatever term anyone uses.
Ultimately, people have to figure out what language reflects their own reality. The important thing, of course, is to be respectful of the humanity and individuality and needs of our children (and of all children), whatever term anyone uses.
amen
Love this! I wonder what words would be used then for bipolar, adhd, anxiety etc… to make the distinction there as well.
oh,honey, i have no idea. i’ve got enough to figure out with autism. lol
It’s funny, my child was born with Emmanuel Syndrome so I say that she “has ES” not, she “is an ES kid” but not for the reason that you stated. I am among the least politically correct people you will every meet.
The reason I use “people first” language is because my daughter’s syndrome does not define her. It is not WHO she is it is WHAT she has. I still embrace her syndrome, it is a part of her. I feel sometimes like I am among the very few parents in the ES community that doesn’t curse her syndrome because as you said, it is part of who she is and will always be. But it is only a part and therefore, I am just not willing to refer to her as “ES First”.
I respect your reasoning, I would have never corrected you because I am trying not to make a big deal of it in my head but for now, my whole daughter is who I choose to refer to, not her chromosomes.
Me, cheering. I love this so very much. Also? “Note: not Hoya with autism.” Oh, dear lord, so funny.
tee hee. 😉
This may be a silly comment, but I want you to know that your casual references to gay people, your casual inclusion of gay people in your conversations (I’ve picked it up a few times now) are really meaningful to me. That you make room for me and others in this conversation by making such quick, friendly references to gay people is more heartening than you can know. Casual gay references are usually negative, NOT positive. I know we’ve come a long way, especially recently, but we still have a long way to go. Sometimes I cry when I read your posts because I am so happy for Brooke and you and your beautiful adventure; sometimes I cry because you say things so casually that make me feel like there is room in the world for me. This all struck me this morning because I was reading your post and thinking about how all any of us want is to feel like there is room for us, a place for us. You make the world prettier.
Thank you,
A gay friend, not a friend with gayness 😉
oh my god, this is NOT a silly comment. it couldn’t be or i wouldn’t be fighting tears (and losing) as i type to thank you for taking the time to tell me this. i am so, so happy to have created an environment where that acceptance comes through.
all any of us want is to feel like there is room for us, a place for us.
a thousand times amen. and thank you for this. truly.
thank YOU,
diary’s author. (not the woman who writes diary)
🙂
I have picked up on the casual references to the gay community as well and it too has made me feel welcome in a strange way. Whether Jess realizes is or not, she continues to further the “normalizing” of gay people as I like to call it. So Jess, I also want to thank you for your choice of words (all around) and continual inclusion of glbt references in your posts. It’s hard to explain to someone who is not gay why it makes a difference but trust me, just the same way as seeing a rainbow flag on my teachers door years ago in high school made a difference, you have too each time you write positively abut gay people.
Danielle
Danielle,
My rainbow flag hangs high and proudly above my virtual door. I want nothing more than to be a part of a world in which we are all free to be, well, exactly who we are. Thank you. From the bottom of my heart.
J
First-time reader here (of a blog that seems to maybe be defunct, based on the date of the last post?) and I’ve only seen this one post, but I think it’s worth pointing out another aspect of why casual, positive mentions mean so much: It shows those of us within the LGBTQ+ community that a space is a relatively safe one. That often isn’t the case, and it’s something you sometimes don’t discover until it’s too late and a place you love or a person you love suddenly becomes unsafe with a simple bigoted comment. By making a point to include us in the conversation, in a neutral and/or positive light, saves us the (often exhausting) effort of trying to determine whether or not the space is a safe one. So thank you.
Hi and welcome ;). While I don’t really post on the blog these days, there’s a pretty lively Diary community over on Facebook. Here’s the latest post ..
Feel free to join me and the gang over there 💕
YES! Another home run outta the park! Love this.
I agree completely with using autistic. I once was corrected by an all-star parent of autism to say “living with autism.” It immediately felt wrong. I like how John puts it: living with something means the something is bad. I also think curing autism means we can’t accept our children as they are.
I have red hair. It is a silly way to frame the issue, but I don’t live with red hair. I have it or I am a redhead. Although being a redhead means I have a higher risk of certain health-related issues, I would never say I live with red hair because it is part of my identity and genetic make-up. Not to trivialize the issue, but I don’t want something that is so much a part of me to be divided from my by saying I am living with red hair.
how about ‘you have gingerness’? yeah. no. 😉
I was a redhead long before I heard people refer to us as gingers, so I am often clueless when someone calls me a ginger. I think of the character on Gilligan’s Island. I suppose I could “embrace my gingerness” or not.
It completely escaped my attention to add… but since my daughter was born ‘with 4q Deletion Syndrome’ I have found a community of other parents to ‘4q-ties’ since. It is comforting to me to have made that journey from diagnosis and label to resident of a world of others like her who have something to identitfy themselves and each other – calling her an autistic 4q-tie sounds even better – the more you help us all to evolve, the more and more I feel better about all of it. The better I feel about it as a parent gives me hope to believe that she, too, will feel powerful because of who she is inside and out. Power in her own autistic, 4q-tie uniqueness.
Love you!
Love this!
Perspective taking.
There are so many ironies in my educational journey I can’t even BEGIN to name them, let alone describe them.
But yes, perspective taking is one. I have an autistic child. Yep. Sometimes we say “he’s on the autism spectrum.” Not so much “he has autism.” But what matters to me is what he says/thinks, and what he’s going to say/ think.
And yesterday I started to think that maybe the sense of disability will be a lot less profound than I’ve been thinking all along. He was watching a video on Brainpop (best $6.99/mo ever) about the theory of relativity, and he looked up and said, “Mom, you know it’s my Asperger’s brain that makes me so smart.” And God help me, I started to contextualize…”well, that’s true, your brain is amazing, and autism makes some things really easy for you and some things harder…” And then I saw his face. Bemused (this kid can do range of emotional expression). So I stopped. He smiled sweetly, and went back to Brainpop.
We’ve had a lot of discussions about “why speech” and “why social group” and “why this school” etc. He knows all about what’s hard. But he loves his autistic brain. And so do I!
Karin
ps What’s with the Saturday post?! Is this about counting down the hours ’till Katie comes home from camp, perchance?! Lol and xoxox.
ps. Really love Lydia Brown’s blog! Not enough synonyms for fabulous to describe it.
Another great post, Jess! I switch back and forth between autistic and person with autism when I talk about my Bobby. What gets my goat is when people say he isn’t “autistic” because he’s been diagnosed with Asperger’s. I have to take a deep breath and remind them that there is a spectrum which includes many forms of autism. I get angry because they minimize his struggles and our family’s journey. The phraseology is often, “He’s not autistic, he only has that Asperger’s.”
This is an interesting post. I have never been offended by,”Daniel’s autistic”. He is. It is a big part of who he is. He also HAS brown hair, HAS green eyes, HAS a great memory. None of those are bad things. It is what it is. This person first thing actually kind of annoys me. It is symantics and personally, I don’t think it would change a thing. If we feel we have to change our language bc autism is a bad thing it makes it a bad thing and an insult. Autism is difficult and frustrating but in some it opens up a world of possibilities others couldn’t see.
Michelle I agree. I don’t say ” HI, this is my Autistic son.” It doesn’t make any sense to even bring in the Autism unless it directly relates to the topic of discussion. In that case, the way I word it shouldn’t matter. If autism isn’t a bad thing, then why does it matter the way we word it? MY opinion is , we need less organizations praying on people’s emotions and using words like epidemic and CURE to collect dollars for their huge parties and more organizations that actually help to educate local communities on what Autism is. We need more that actually GIVE MONEY TO THE PEOPLE WHO NEED IT instead of pretending that Autism is a disease that’s horrific and devastating. THAT is what needs to change. Not the way we say things. Just my opinion. Good post and well worded, I wish that I was that eloquent lol
I personally use a mixture of all the terms (except the “with Autism” I have never heard that one before). 😉 Although some people find it strange that I am so open about it, It is what it is and there is nothing wrong with being Autistic. One of the things that I find confuses people is that I say it with such pride. ❤ Thank you again for a wonderful piece, I LOVE reading YOUR thoughts on life, I pray one day I can be as classy as you are when it comes to talking about our life in writing.
I am still at the early stages of my son’s diagnosis and I flip back and forth. The truth is that he will define who he is.
I never used the phrase “my son has autism”, I always said he was autistic (or at least from the moment I found out). To me, saying that he has autism means that he can be rid of it at some point (or cured if you prefer) which I know is absurd (like curing left-handedness or being a girl or a boy). “A person with autism” is a sick person, and autism is a sickness – that’s what it sounds like to me. To me it’s the same as calling a deaf person “hearing disabled” or some other nonsense like that. No deaf person ever calls themselves anything other than deaf, because that’s what they are, and they are very much ok with it. Deafness is not a disease, neither is autism. I love my autistic son, and I hope once he can put it into words, he can also say ‘I love being autistic’, because to me it would mean he loves being himself.
Thank you for this Marta – something has started to click for me when you talk about being deaf; also a challenge in a hearing world, but brings with it gifts of visual and sensory appreciation “people who have hearing-ness” will never experience or appreciate.
Thank you for that – it helped somehow. 🙂
Oh, and Jess – I don’t know you, but thank you for this post 🙂 I found it through Mom not otherwise specified, and her blog is awesome. So, I’ll try and find time to read yours from the beginning now too!
You are on my bucket list….of people on this great Earth that I want to meet and HUG. I have often become tongue tied when describing my amazing, unique son. Your written words will help me to process my thoughts and introduce my complicated, but wonderful family life within the autism spectrum in a POSITIVE light. Thank you!
If you ever come out with a “Top 10 List” of you best posts, THIS HAS to be on it!
THANK YOU!!!
I agree with you on pretty much all of this. The only thing I want to say is that this reminds me of a conversation I had once with a friend. He said he hates being called, or hearing another person called, “a Jew.” He is happy with “Jewish”, but when he hears “Jew” it reminds him of phrases like “dirty Jew” and so sounds hateful. (I’m Jewish too but never had those connotations until my conversation with him!).
I don’t exactly know where to go with this, except that some terms have connotations for people that we can’t always predict.When a word is repeatedly used in a horrible way, it’s hard to separate from it. Many gay people have retrieved words like “queer” to use as their own, but it doesn’t always sound the same when straight people use them.
Enough. Good work here, everyone.
I eventually got to this same place with the whole person first thing, in much the same way. Back then, in the early days surrounding his diagnosis, I sure made it seem as though I was so completely and totally accepting of his having autism, being autistic, or on the autism spectrum. I was SMITTEN with him and I guess that came across as total acceptance of the diagnosis when all I wanted to do was vomit every time I had to SAY out loud that he was one of those things. Not at all because I didn’t accept him, because good GOD, I love everything about that child…his utterly amazing memory, all of the scripting in that Godforsaken cute voice of his, his (also like Brooke) uncanny ability to imitate sounds and accents….heck…pretty much everything about him makes me want to squeeze his guts out 24/7…but my defense mechanisms kept me from being able to just be alright with describing him as autistic..The word seemed so harsh. And frankly, when I feel so scattered all the time and just the feat of trying to be a mama to one NT kid and one autistic kid….and an advocate for him and friend to all of my awesome friends and political/wedding/child photographer is overwhelming at best….discussions like these, while VERY important and shifting to our community, make me more tired. Because truly, he does have autism….just like he has blue eyes and long hair and a dislike for math. He has all of those things, just like he has autism. And he is on the spectrum and he is autistic. Just like he is Catholic (but really just an angel, and I don’t think God cares what religion he was baptized in) and thin and smart. The discussing of semantics just doesn’t seem as high a priority when we are all (well me, especially, since i can’t really speak for everyone.;)) is just trying to figure out WTH to do, how to do it right, and do it all every single day. See what I mean? I agree with and understand completely the whole conversation, however.
I think what I am trying to say is I am in awe of mom’s like you and others who dig in to these topics that really mean a lot to our community (and the autistic adults, in particular) in terms of making our world a better place for our babies. My level of acceptance these days is so much higher and I am much more comfortable with labels that everyone else needs to give him. I actually use all of these terms to describe Laws, because to me….I just see HIM and what those labels are or what they mean to someone else doesn’t really matter to ME. I realize however, that changing the rest of the worlds views about the terminology used to describe our children (because dang it…there’s gonna be a whole LOT of autistic adults here real soon )and what those terms mean and how they are portrayed, is imperative for understanding and acceptance in the big wide world.
Autism, autistic, having autism, being on the spectrum are words that will likely always be sensitive to me because of how it effects and hinders his ability to relate to others and how it has kept part of him from us. BUT, I most definitely want him to PROUD of who he is….mo matter what. And I hope one day, he can have a friend, like Brooke, who is autistic, that he can share his life with and be proud of having autism. Or being autistic. Or on a spectrum…..as long as he has others who are like him and he’s in a place where he can feel loved, wanted, and included….I will be one happy mama. Maybe a little tipsy and probably freaking just as exhausted…but happy, nonetheless. I shouldn’t write these comments this late at night. I hope this made sense. 😉
What a great way to look at it.
When it’s put that way, it’s like saying that anyone “different” than you is wrong. If only all kids, let alone adults, could understand this. If only we all could see how not fun it would be if we were all the same.
I guess I’m one of those people who don’t care either way or maybe I’ve just decided that semantics are the least of my worries when I’m trying to keep my 2 year old from licking the floor at the grocery store. I’ve heard myself and my husband use both “he has autism” and “he is autistic” interchangably. Words don’t change the fact that autism is a part of my son. It lives in our house day after day regardless of what we choose to call it.
As a mentally ill person I embrace your philosophy. I have grappled with the whole label thing too. The “community” of organizations who seek to help the mentally ill, NAMI, MHA, and others, tap dance around the label and refer to us as “people with mental illness.” I eventually climbed up on their bandwagon but with this post–and your linking to Jim’s post–I have jumped off and exclaim loudly that I am mentally ill. Better yet, I am manic-depressive; I am an ADDer–or however you might say that one 🙂 Thank you, thank you, for this wonderful, wise post!
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THANK-YOU! I recently got into an intense discussion with someone because I said my two boys are autistic and I was politely corrected that they have autism. I feel the exact same way about it as you have so clearly written here, it is an intrinsic part of how they will experience their worlds and therefore just as I don’t say I have Paganess I say I’m Pagan it doesn’t change that I’m also a million other things and so are my boys.
I never understood why “has autism” was more politically correct than ” autistic”. When you “have” something, it’s like a disease. Autism isn’t a disease. It’s not contagious or medically treatable. Autism is a part of our children that will not just go away. They are autistic and always will be, even if, God willing, they reach a point in life where they are able to fully participate in the typical world. My son is autistic. He will be challenged by that his whole life, and I accept that as it is.
Ok, I finally “get” it. I never, ever thought of it that way! I was just like you, saying he “has autism” but so many friends still say he “is” autistic and it just bugged me. Now, I understand, and this just makes so much sense. Thank you for posting and linking to this throughout your blog so I could find it!
I don’t know if you’ll ever read this, being as it’s a very old post, but I just wanted to contribute.
I am in school to become an elementary education teacher. We have talked about disabilities in many of my classes, and every time (including the special education class) we have been taught to refer to someone with a disability as just that, not as a disabled person. As I read your post, I learned a lot. My courses and professors have never once talked about disabilities the way you just did.
I wanted to ask how you feel knowing that “person first” language is what is being taught to future educators, and what would you say to the professors who are teaching it?
I’d ask them to read this post. And more importantly, to read the posts to which I linked within it written by autistic people about why it’s so important to them. ;). Thank you for asking.
When someone spits ‘autism’ at her as a dirty word, I want her to turn it back on them, framed as her own. “Yes, I’m autistic. So? I’m damned proud of it.”
Somebody does that to me, I just say, “So was Einstein. Your point?” Simultaneously tells them that being Autistic isn’t always bad, is often no big deal, and is even good in some cases. If they carry on, I play at pity party by saying, “I’m so sorry you haven’t the ability to think as uniquely as I can.” That soon shuts them up like nothing else can!
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He has love. She has a great intellect. He has a gift. She has grace.
I am a pedant, but don’t really have an opinion on the subject. Well, except that making a point of using all the various constructions in the positive on ordinary conversation may allow
Kids to grow up without negative connotations.
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Thank you for this informative blog-post. Moving forward, I am going to adopt identity-first language rather than person-first language. I was wondering, is it appropriate to ask someone what language to use when referring to them? I would appreciate any feedback! Thank you.