autism · Down syndrome

Person First Language: I can’t win.

Yet another person in the Down syndrome community (I’m sorry, a community with people who have Down syndrome in it) has sent me an email saying that it’s wrong for me to say that Casey is “autistic” instead of saying that he has autism. Anyone outside the special needs community reading that is scratching their heads and saying, “I really don’t get the difference.” Anyone within usually has an opinion about this. Don’t get me wrong- I’ve actually had people from within the Autism community tell me that it’s wrong that I ever say that Casey HAS autism instead of “is autistic.”

I can’t win no matter what I write! Maybe I’ll just write it out both ways so that I can make sure to offend EVERYONE:

My autistic son Casey who has autism doesn’t give a damn what you call him. He just wants to tell you about the Titanic.

For me personally, I’m so bored of “person-first language” I could tear all of my hair out, light it on fire, and watch it burn at the feet of a horrified special needs community.  It bothers me in particular when people tell ME how to call MY KIDS (Although, Heidi was not wrong when she said it’s probably not a good thing to call them assholes).  It bothers me that in the Down syndrome community where we plead for acceptance and love of our kids who are ‘chromosomally enhanced’ that we’d actually make it a point to separate the child from the diagnosis. I firmly believe that doing so doesn’t show that the kid is person first. It shows that we are trying to distance them from the way they were born, who they are; as if their diagnosis is something to be ashamed of. Their autism and Down syndrome are not something that they will ever be without. It’s not something they will be cured of  outgrow.  I want them to embrace it.  Does it lump them together with their respective communities of people with their same diagnosis? It sure does. That doesn’t bother me either.

No amount of sentence jumbling is going to make people not notice Abby’s Down syndrome when they first see her. That’s okay with me. I’m not ashamed of her disability. Forcing people to change the way they address her isn’t going to make them think, “Oh, noooooow I see the little girl and not her Down syndrome, I’m going to treat her better!” It’s going to make them think, “Wow, the mother of that Down’s girl is a sanctimonious jerk.” Want to know how I know that? Because I’ve been told it! I used to force people to use person-first when they spoke about Abby. I fully embraced what the community told me to do. I was a sanctimonious jerk about it and I was wrong.

My other beef with it is that it’s linguistically cumbersome. And while I won’t be saying Abby IS Down syndrome because that doesn’t work linguistically either, I’m not going to bend over backwards to use person-first language all of the time. Sometimes “autism” works better in a sentence than “autistic.” When that’s the case, I’ll use it that way.

I don’t care how you address your kids. If you use person first or not, fine. Just don’t tell me what to call my kids.

(unless, as was mentioned, you see me calling them assholes.)

 

28 thoughts on “Person First Language: I can’t win.

  1. When my son was first diagnosed I would tell friends and family that “he has autism” instead of saying that “he is autistic”. I didn’t want his diagnosis to define him. What I’ve learned most in the 3 years since his diagnosis is that it doesn’t matter how you phrase it. It is what it is. I would like to meet the parent of a kiddo with autism who can sit around getting offended by the way something is written so I can learn how they find the time. I’m so busy keeping my son from playing with poop, escaping the house, eating the woodwork, chewing on batteries, playing chauffeur to school, dr’s, therapies, etc… I’m too tired to care how a stranger on the Internet writes a story that I probably only have time to read on the fly. Keep up the good work!

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  2. I am quick to tell people that my older son is autistic and my younger son has Down’s Syndrome. It is part of who they are, affecting everything they are from their personality, to the way they act, to the way my 5 year old is still in diapers, and to the way my 2.5 year old is still not walking. Telling others about my children in this way leads to conversations about my kid’s diagnosis, leaving others to ask me first hand about autism and Down’s Syndrome, thus clearing up some misconceptions as well. It also brings out an extra amount of patience and the beginning of understanding of who my kids are. I would never change or remove the diagnosis that my kids have, it would completely change who they are as I’ve come to know and love them.

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  3. I just read this entire post out loud to my husband. I am SO glad someone is addressing this. It IS cumbersome and it DOES NOT change the way that people view our children. I get it though– I try to use person first language– but it’s ridiculous to bend over backwards. It misses the whole point.

    I was recently complaining about how difficult it is to blog about disability, simply because of the linguistic issues. It gets my sentence structures all out of whack to say “someone who is living with a disability” as opposed to “someone who is disabled.” I get why the first example is more appropriate but, jeez-louise does it get old to type all of that! I think it’s high time we all chilled out about getting our words just right. It can’t be done. Besides, the way we speak isn’t nearly as important as the way we treat our kids and show them that they are valued.

    I’m sharing this post. STAT.

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  4. What about when my kids ARE BEING assholes? Should I then say Child 1 has asshole? He does, but I feel like I’m no longer conveying the message I had originally intended. Now I don’t know what to call my kids without upsetting you, Lexi. You are impossible to please. Maybe a game. Sheesh. READ this! Don’t be an asshole- I mean, don’t be a person with an asshole.
    Dammit. See what you did? http://ifbearscouldtype.blogspot.com/2013/06/maybe-game.html

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  5. If there was a “Down syndrome adjective,” I’d be cool with it. Autistic = adj. Down syndrome = noun. In my mind, because I teach parts of speech every freakin’ day, that is the difference.

    Really, what I care about is HOW someone discusses Ellie. “Did you know she is Downs before she was born? I’d never have that testing!” is annoying, not because of the “is Downs,” but because yes, I had the testing, and I obviously still have my child. “Kids with Down syndrome are all ….” is equally annoying, even though it uses people-first language.

    I’m just going to call Ellie my minion.

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  6. Fantastic!!! Then of course you have the adult autistics who get mad when you call them “adults with autism”. Dang, you just CAN’T win — except you did with a fabulous blog entry!

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  7. Yes. Please and Thank you for this. People can have there opinions but please, for the love of everything that is holy, do not tell me what to call my children. Don’t tell me how to be a better parent to my Autistic son with Autism.

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  8. So agree! I was reluctant to call my youngest son “autistic” for the first few months post-diagnosis because that sounded more severe than merely “having autism,” or (even more benign) “being on the autism spectrum.” He wasn’t too far behind his peers at that time, but he is now–nonverbal and fairly impaired at almost 5. Today, referring to him as autistic doesn’t seem out of place. But I still refer to my older Aspie kiddo as “having Aspergers” or “being on the autism spectrum.” It’s a distinction with a difference–calling someone autistic that the average bear would just presume “quirky” would be misunderstood at best or perceived as overly dramatic at worst (albeit arguably semantically accurate).

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  9. Yeah, I still don’t know what feels right to me. I use both. I don’t give a flying flippedy floo what other people call their kids. And, I’m not going to lie, I have called my kids assholes lots of times. Behind their backs of course.

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  10. This post is great! I am a language geek, but mostly self-taught. I am interested in the way people react to language and what motivates further communication. The reason this post is great is because it is honest. And if we could get everyone to speak honestly without malice and a touch of empathy, none of the words themselves would matter. (Dreamer!)
    Anyway, here is a post that you may appreciate (not mine- so I’m not selling you something, don’t worry) that I read yesterday.
    http://kendramerritt.com/person-first/

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  11. As an asshole autistic with Autism and Asshole Syndrome, and mom to an amazing autistic daughter with Autism who is chromosomally deficient and has 4q Deletion Syndrome, let’s all just call it a day and have an iced cold beverage, sit outside under a tree and chillax.

    Clearly, we will never please them all.

    Love you, Lexi!

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  12. THANK YOU. I’ve had the same problem when writing about autism. I’m trying to talk about something important, and people feel the need to whack me in the head with the dictionary. The funny thing is, many times those people are wrong, not just in terms of their attitude, but with regards to the English language!

    Listen, everyone: English syntax does not dictate that listing a word before another in a sentence always makes it more important. There is no such rule. Saying “autistic person” does not indicate that the autism is more important than the person.

    Three years ago, I wrote a blog post titled “Secrets of Success,” (http://robert.walkertribe.com/2010/03/secrets-of-success.html) in which I talked about the things I’ve learned about success from my autistic daughter. (Sorry, “daughter with autism.” *smirk*) The majority of the responses I received were positive, but two people reacted negatively because I used the phrase “afflicted with autism.” One person said, “My child has autism and they are not afflicted!” I had to wonder if they actually understood what the word “afflicted” means.

    My dictionary says “afflict” means “to cause pain or suffering to; affect or trouble.” That was precisely what I meant when I wrote it: people with autism SUFFER. It’s not pleasant to contemplate, but no amount of dancing around the wording will change that fact. My daughter’s affliction is not only real, but it was central to my message: Success is not what you achieve, it’s what you overcome. My daughter’s accomplishments may not seem like much compared to her peers, but she has OVERCOME far more than most people I know.

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  13. Amen, sister!! As a board member for an affiliate of the Autism Society, it is important that I use person-first language as much as possible. My problem is I can’t ever remember which one is person first.

    Scott Badesch, the President/COO of the Autism Society of America, asked his son if he prefers to be called a person with autism or a person who has autism. His college-aged son replied, “I’d prefer to be called Adam.” My son agrees. He really doesn’t give a fig if you say he has autism or is affected by autism or whatever phrase you use. He wants you to know his name is Nathan, he has autism/is autistic, and to him that means sometimes noises that don’t bother you bother him–a lot. He wants to make certain you know that noise is a big issue in his life and that he’s working to get through it. Then, now that you have been introduced, he wants to know if you can play now.

    So I’m with you all the way!! Thanks for sharing.

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  14. The fact that people even have the time to write you such a thing. Butt out! I mean come on….if you have time to be that nit picky…you need to evaluate your priorities!

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  15. I liked everything you said. I have a disability. And yeah, I am disabled. Whatever. I also make comments that I’m gimpy, or even better, Gimptastic. =)

    Our disabilities only define us if we, and the people who surround us, allow them to do so. In the same way, the wording only has the power we allow it to have. Whether you say that Casey “has autism” or “is autistic” is irrelevant, quite frankly, so long as, at the end of the day, he’s nothing more than your kid. (And clearly, he is!)

    Blow those people off. They’re looking for an excuse to exercise their own self-righteous anger and indignant superiority at the expense of others. They aren’t worth your time.

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  16. I am glad you wrote this, but now I wish for you and all of us to just ignore people who suck up our precious little energy and overshadow the important things we have to say by trying to judge us with their politically correct codes of conduct. I am not saying language doesn’t matter, but it is contextual and this is not the context for this kind of BS. The morons who might perceive first person usage of “autistic” are not the ones reading our blogs and I trust the collective community that does, is capable of understanding what we do and don’t mean when we say our child “is autistic”. I don’t know who all these parents are with so much time on their hands that they feel inclined to waste it on scolding those of us who obviously have a deep respect and understanding for our children’s humanity, but I wish they would come and clean our houses instead. That would be a far greater contribution to the community of parents of children who HAVE AUTISM and their children WHO HAVE AUTISM. Personally, I often just say my three kids are on the spectrum, but I only do this if I feel lazy or have no need for anyone to actually understand what I mean. While they share many of the same or similar diagnosis, they are far more different than alike. Plus their list of “haves” is a mile long – Autism (ranging from HF type to moderate to severe), PDD-NOS, Aspergers (or is it HFA now), NVLD, ADHD (of differing sub types), SPD, motor functioning disorder, various learning disorders, anxiety disorder, etc…Who wants to say or hear that outside of an IEP? For each of them though, there are conditions that trump the rest because they so pervasively effect their behavior, ability, perceptions and emotional responses, and to some extent, always will. My oldest IS AUTISTIC – everything else he HAS is trivial compared to the way that HAVING autism shapes his life. It describes him much more than the fact that he is a boy scout, or Jewish, or tall, yet no one entertains such nonsense in those contexts. Why should the ignorant bozos, who perceive “being autistic” as an degrading label that defines our children as individuals, dictate how we speak? No category of disability, illness, religion, race, class, etc defines a human being, and if a listener has to rely on whether we express those attributes in the first person or not to make that determination, that listener is a moron. We strive for a world where whether you ARE autistic or your HAVE autism, you are entitled to a valued place in society and basic respect as an individual who more than a sum of your various demographic and diagnostic categories – where autism is understood and accepted to the point that this ridiculous semantic debate has no relevance. I don’t think policing our syntax is going to do much to get us there. But then again, I AM hypoglycemic, near-sided, peri-menopausal, Italian, short, underweight, overworked, sleep-deprived, middle-aged, divorced, remarried impatient, outspoken, temperamental, kinda hungry, really exasperated, …..

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  17. You’re right, words are just words and it should be up to you how you refer to your kids, and up to them how they refer to themselves. I remember person first language made a lot of sense when I first learned about it while working in a special education school, because at that time I would hear a lot of people saying things like, “I have two wheelchairs, three autistics, and a Downs in my class,” which makes it sound kind of like they’re ordering fast food instead of talking about their students! But as far as being autistic or having autism, I don’t see a huge difference!

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  20. I think the message of person-first isn’t to say that Autism is an affliction or that it’s not who that person is. Rather, it is trying to convey that the label, the diagnosis, the personality, whatever is not the only thing that person is. By saying Autistic, it’s as if we can be only one thing, but if we say has Autism, then that is just one aspect of our lives. Even if we embrace it wholeheartedly, we are more than that one diagnosis. words matter.

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