Does person first language indicate a lack of acceptance?

I really had thought that I was done with the topic of “person first language”. I really had thought that I had said all that I had to say. But then last night, someone said something to me that brought me right back into it.

I tweeted this “People with Autism are not damaged nor defective. With your understanding, acceptance & guidance, their potential is unlimited.

This prompted one parent to respond in agreement but also added in this: “my son is not autistic he has autism

For some reason, this response kept me awake last night.

Do you truly accept your child?

I’ve never been met with person first language in agreement to understanding and acceptance of a child with Autism… somehow, it just really struck me as odd, like it was contradictory in some way.

All I kept thinking was, if you truly understand your child has Autism, if you truly accept that your child has Autism… you’d have no problem with saying that they are autistic.

What is acceptance?

acceptanceAcceptance is a funny thing, because it tends to mean different things to different people, or have different meanings in different situations.

For example, when my son was diagnosed with Autism, it took a little while for me to fully accept that diagnosis. I had to accept that he had a disorder, something that I couldn’t fix.

It wasn’t until much later that I had to accept that he had Autism. While it sounds like I had to accept the same thing twice, it’s very different.

I accepted the diagnosis the first time, but then later I had to accept the fact of life, the fact that his life was going to be different, that I’d have to parent him differently, that there would be very different struggles for me compared to other parents I know and more so, to accept that my child was going to be different.

I had to accept that Autism was a part of who he is. I had to accept.. that he was autistic.

While some people think they have accepted the same thing I have, they may actually be referring to one instance of acceptance while I am referring to another, even though we may both think we’re talking about the same thing.

The funny thing about perception

It occurred to me that when a person pushes “person first language” on others, it’s because they do not fully accept their child. Well, more to the point, they don’t accept the Autism that is within them. To them, the person and the Autism will always be two separate things. That the person can’t be autistic because that would be accepting that Autism is a part of who they are.

So I asked myself why that is… which lead me to think of it another way.

What if that person had natural born artistic ability. Would that parent refer to their child as “a child with art” rather than an artist?
What if that child had a natural born aptitude for math? Would the parent refer to their child as “a child with math skills” or a mathematician?
What if the child had a natural born ability to play music? Would the parent refer to the child as “a child with musical ability” or a musician?

Then it dawned on me… it’s because the parent would accept those skills… those “gifts”. Those are all clearly good things. There is no negative implications what so ever in regards to having those things be a part of who those children are.

But with Autism, there is a negative. There is a down side.

Nonetheless, Autism is still just as much a part of who that child is much like the art, math or music… in fact, I’d argue that Autism is more a part of who they are. Autism affects every aspect of a person’s life since, in reality, it affects all aspects of a person’s input, output and interpretation of the world around them.

But it’s often negative. It’s not often thought of as a gift.

And so, it’s not as easily accepted. It’s not as easily made into an adjective… like musician is.

We don’t see a child and his musical ability as being separate, even though playing music is just an ability.

Meanwhile we do see Autism as being a separate entity, as not being a part of them, because it’s a disorder. While in reality, this makes it more a part of who they are than any one ability does.

What about those with Autism that use person first language?

There are some people with Autism that use person first language because they hate how Autism has affected their life. They hate how difficult it has made things that every other person takes for granted. They hate how Autism has made them feel like an alien on their own planet.

I can understand that, I can sympathize. Still though, I think I could also argue that we have all felt that way at some point. Not to the same degree and not all of our lives, but at some point. Most likely when we were awkward, rebellious teenagers.

Anyway, the point is, while I can understand that feeling and the need to reject the cause of such heartache and struggles, I would also argue that at some point, that person could come to terms with their weaknesses, empower their strengths and move forward if they learn to love who they are, learn to love their unique perspectives and talents and learn to love every bit of themselves… including the Autism.

Many people hate who they are, this is especially true in autistics, but sometimes it only takes the right person, the right moment, the right miracle to cross your path to show you what there is to love about yourself.

I think that if that happens… when that happens… even a person with Autism can come to accept, and love, being autistic.

Does that mean that people shouldn’t use person first language?

Person first language does have it’s place. And of course, I understand a parent’s need to believe that their child is their child… not a label, not a diagnosis.

I also understand that acceptance is far more complicated than simple terminology.

While person first language will never go away, and is not always black and white, and does have it’s place (such as in legal documentation, schools, governments, etc)… I do still believe that it can be a very clear indicator about a person’s level of acceptance of that person.

While not a guarantee, because some parents truly do accept their child through and through, Autism and all… and still prefer to use person first language… I do feel that in most cases, it does show where they are on their path to true acceptance.

I would ask of those parents; if your child, at some point, shows a sudden aptitude for music, and it’s due to their Autism… would you refer to them as a musician? An autistic? or both?

Think about this…  have you ever noticed that no one has any problem with the term “Autistic Savant”?

Have you ever heard anyone insist on “Savant with Autism”?

When it’s a good thing, no one has a problem with it.

About Stuart Duncan

My name is Stuart Duncan, creator of My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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14 Responses to Does person first language indicate a lack of acceptance?

  1. Angel G September 2, 2011 at 9:43 am #

    First off, my children are autistic. They have autism. And they are children with autism. I fully accept that this is a part of their makeup and I’m good with that.

    Some people think that autism is a disease and must be stamped out. I don’t. But then again, my children are not so called low functioning. I imagine it would be very hard to accept some of the things I hear about from other parents.

    Some people think that acceptance is a way of giving up. They cannot accept autism because, to them, it means giving up trying to make things better. I don’t. Acceptance is not giving up – it’s accepting what is. You can accept what it is and still do your best to make it better.

    Autism is a part of our lives. I do not think of it as a disease or even a disorder. I think of it as our way of life. And because of that, there is less anger and despair in our house.

    It is what it is what it is.

  2. Lisa Quinones-Fontanez September 2, 2011 at 9:51 am #

    At the end of the day – does it truly matter “with autism” vs. “autistic”? Granted, I do not have autism nor am I autistic. But my son is and I don’t care what you call him so long as he is treated with dignity and respect. Isn’t that the important thing? Isn’t that what we all want?

  3. Kirsten Jessiman September 2, 2011 at 10:34 am #

    I have a very good friend who has visual impairment. She is blind.
    I have a son who has autism. He is autistic.

    I mean, seriously. I don’t get why people get so hung up on the language. One of my son’s caseworkers once told me not to refer to my son as autistic, that I should instead say that he has autism. I responded as follows:
    “So am I allowed to refer to you as a red-haired woman? Or do I instead have to say that you are someone with red hair and the physical attributes of a female adult human being?”

    It flummoxed her, to say the least. But I think I managed to underline my point that being autistic is not something to be ashamed of. I feel no need to hide behind linguistics in order to describe his condition.

  4. Stuart Duncan September 2, 2011 at 10:59 am #

    Kirsten, that is the worst. No one should tell you how to refer to your own child.

  5. JC September 2, 2011 at 11:10 am #

    To quote you, “No one should tell you how to refer to your own child.” Yet this is exactly what you did. I wrote a statement that is true for me, yet I read that you believe I do not accept my son’s diagnosis. (First of all I have enjoyed your blog and one thing that I have heard you mention is creating community, why did you not mention you were moved to write this? No time to communicate? create community?) I never said others should not but I have discovered from study & experience in counseling that using person first language liberating for some with issues (including those that are always seen as the pianist). Do realize that the Peron first language also helps others who not as aware of the reality and even blessing a kid with autism see them as a kid first and not the diagnosis. I am sorry I kept you up at night, but I am not happy that you have told me how I most refer to my own child.

  6. Stuart Duncan September 2, 2011 at 11:21 am #

    JC, I never said that you must refer to your child in any which way, I said that it really got me thinking about acceptance.

    At what level the person is at, at how a person perceive acceptance compared to others, at whether or not they really have accepted what they think they have accepted.

    I also said that it’s no guarantee. Using person first language is not always an indication that the person doesn’t accept their child… sometimes that person does accept their child through and through and yet still prefers to use person first language anyway.

    You didn’t keep me awake at night because it bothered me, but rather because it got my mind going on a new way to look at it… and on all the ways that acceptance is different for all of us.

    I’m sorry if that’s how you took it but that’s not what I meant. Rather, we should all think about just how much we truly do accept the way our child is… do we choose to use certain terminology because we don’t have as much acceptance as we thought we did or are we completely comfortable with our child, do we completely accept who they are yet use certain terminology based on some other personal choice?

    It’s not you I direct this post to, but rather all of us who choose to use some form of terminology over another or one way of thinking over another. It was just your tweet that got me thinking about it all.

  7. JC September 2, 2011 at 11:39 am #

    Well I do think you may want to do some research on how language is used in psychology, and especially someone like myself that follows narrative modality, this language is very important. This is academics, but I do understand your point that some may use it to not accept the reality, yet I do believe most use this language as a way of acceptance. I was diagnosed with a learning disabilities years ago and when I changed my language I found doors open and now I have a masters and actually can write. (I hope you checked out my reflection on yesterday).
    I have no problem you using different term but to say you know it is a level of acceptance I simply must disagree with.

    What hurt was that you had no interest in asking me why I use the person first language. You may call it PC but it has been my experience both in education, counseling, and personal that has me talk that way.
    By the way I do not hate how autism has come into my life. Yet I see my boy first which includes all aspects of his life (not too mention he has 2 other diagnosis and should I choose only one that he is?)

    Again, I never put down nor would I imagine telling someone I know why they use specific language. For me it is an important way to say it, as it was for me, my nephew. Try it on if it doesn’t fit don’t use it, but please don’t say it demonstrates ones’ level of acceptance. For I will confess I would have written a similar blog about those that use language as you do. So thanks for sharing.

  8. Stuart Duncan September 2, 2011 at 11:49 am #

    I have studied it which is why I said that it does have it’s place.

    Also, I didn’t ask you because this blog piece is not directed at you but rather a commentary on person first language in general.

    As such, it’s certainly not intended as a “put down”. If it was, I would have named you, the title wouldn’t be a question and the entire last section wouldn’t even be there.

    It’s simply a thought, a general broad, open ended thought… do some people use person first language because they have some lack of acceptance?

  9. JC Mitchell September 2, 2011 at 12:33 pm #

    Oh I don’t think it as a “put down,” but I reread your blog and it seems clear to you that person first language is a level of acceptance. I do greatly appreciate you always wrote “some” and I do agree that can be the case. I hope you truly understand not using person first language for some (like me until you openly shared) would say the same thing about your level of acceptance. As you said it has a place, but I would go as far that everyday language is also that place.

  10. mamafog September 2, 2011 at 12:34 pm #

    Not long ago I thought about anyone who used the term autistic in the some of the same terms that you describe people who use first person language. I realize now that the language we use to describe our children and even ourselves is highly personal, and does not necessarily reflect the author’s state of mind.

    I am only in charge of how I describe my child. I would not presume to tell another parent how to think. If you want to call your child autistic, that is fine with me. I won’t be writing a blog post criticizing your language. 🙂

    My daughter has autism, and will be significantly impacted by it her whole life. Describing her using an adjective does not change that fact. Whether she and I are sharing giggles or she is in the midst of a tantrum, she is my daughter first.

    I wonder if the word autist were to be used instead of autistic, it could resolve disagreements from both sides of this issue.

    To answer your question, if my daughter learned to play an instrument I would call her a musician. The word musician is a noun, not an adjective.

    I have two questions: 1. How do you define acceptance? 2. When a child has (or gets) additional diagnoses how do you refer to them – as an autistic, ADD, OCD child?

  11. Elise Ronan (@RaisingASDKids) September 2, 2011 at 12:55 pm #

    I have to tell you I am tired of this argument. (Yes i know I am posting a comment) The reality is that you are entitled to decide how to describe your child and when they are grown they can decide how to describe themselves. Personally I think calling my boys autistic rather than just boys is a cop out and allows anyone to think less of them and their abilities.(This is the reality of society and quite frankly I am not here to make them autism warriors nor does the autism community get to make them autism warrriors. When they are grown they and they alone, will decide if that is what THEY want to do.) They are boys, hence human beings first and autism is only a small part of them. They are many things, lovers of games/computers, history, poltiics, art, comedy and brown haired, brown eyed gentle and kind people. To define yourself or anyone with a one word defintiton is quite frankly limiting to everything that they are.

  12. Alicia September 2, 2011 at 4:43 pm #

    As an Autistic person I can’t stand being called a person with Autism, it makes me feel sad, broken and like showing all my weakness as separeted of me that one day they can be fixed and I would be a person with normality, I don’t want that.

    I think that in the end it’s the Autistic/’person with Autism’ that should decide, but some people insist in calling an Autistic person that asked to be called Autistic as a person with Autism, I can’t agree with that.

    As what parents can use to refer to their children, no parent can’t call their children anything the children doesn’t like, parents need to call their children good things, things that make them proud of who they are, that accepts good and bad things in the child, no parent can call their children whatever the parent want, use language to make your child feel pride.

    • PK September 26, 2013 at 2:24 pm #

      Thank you for your words, Alicia. That’s really the heart of the matter. We need to listen to how our words impact others, and listen when the tell us what they want. As a mom of a young boy, who is also autistic, I am proud of my son for who he is as a person. Autism is a part of who he is, part of what makes him the person he is. I’ve been reading a lot of blogs by autistic authors as well as parents, and by far they seem to prefer “autistic” much more than “with autism”. I’m following that lead.

  13. smartygirl November 11, 2011 at 12:34 am #

    thanks for this article. “person first” language rankles me, for the reasons you mention. i also find it interesting that most of the advocates of person first language are not the people it is used to describe. people don’t describe *themselves* this way, they describe *others* this way. and i think that’s very telling.

    i was looking for a particular blog post when i found yours; before i found this i came across someone advocating person first language who basically compared autism to cancer or “a permanent bruise on your shoulder.” ugh. so nice to find a well-thought-out and well-written post from the other side of the fence.

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