Tag Archives | person first

Autistic – Noun or Adjective? Which is offensive?

By on July 12, 2013 in Autism

So I wrote my last post and titled it: “AutCraft – The not so little Minecraft project for autistics and their families” and went about my day. Until this happened:

autistic-nounorajdective1

autistic-nounorajdective2Now, I’m sure you’ve all heard the “person first language” thing, where some people insist that you use “person with autism” rather than “autistic.” I’ve written about it before in articles such as The last word on “person first language” where I explain why I use the terminology that I use.

This however, is entirely new to me. Now, in this seemingly middle ground area, it’s ok to use as an adjective but not as a noun. The woman that tweeted above, uses “mom to autistic son” in her bio and yet uses “ouch” and “awful” in her tweets to me because I referred to people as “autistics” in my post title.

I am an understanding person though so I’m not going to dismiss hers or anyone else’s concerns. I do however feel that we should work this out so that we have a better mutual understanding of each other.

Now, in conversations, I’ve referred to myself as a Canadian, a baldy, a male, a genius, an idiot, an autistic, an introvert, a bore, a supporter, a nerd and a whole bunch of other things. These can all be used as adjectives.

What I need now is a list of terms that you use when referring to yourself.

Then I’ll pick and choose the ones that I think should offend me and we can then come to some sort of agreement where you can no longer refer to yourself that way and I can no longer refer to myself that way and we can finally go back to being happy people.

Because the last thing I’d ever want is to offend YOU by referring to ME.

 

 

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A label by any other name smells just as… autism

By on April 5, 2012 in Autism

Do you like the title of this post? Is it catchy? Humorous? Weird? Clever?

Well, maybe not clever. The point is though, that the title of this post kind of hints at what you might expect in this post but it really doesn’t give you a great idea of what it really contains. It’s just a title. It’s not the whole story.

By now I’m sure you have it figured out, I’ve hopefully made the point.. right? A label doesn’t tell the story. A label is just a title. Right?

Wow, this was a short post.

Wait! I have more.

Diagnosis Denial

I’ve heard from some people that suspect that their child could have autism, or at least some autism-like traits… and they’re afraid to bring it up with their doctor. They don’t want a diagnosis because they don’t want their child to have the label for the rest of their lives.

Then there are those who do get the diagnosis for their child and refuse to believe it. They absolutely will not believe that their child must bare this label for the rest of their lives. They try to pretend that the diagnosis never happened and simply continue to raise their child as they would have anyway… forgoing advice, help and services.

Denial is far more common than you might think and while understandable, it can be harmful. There’s an expression: “It is easier to build up a child than it is to repair an adult.”

What that means is that early intervention can go a long way to helping your child progress, grow and develop the skills they need to be successful and independent adults. Any delay can hinder that progress. One year missed in the early stages can take several years to repair later in life. People… ALL PEOPLE… develop in their early years and what is established early is what makes up their core personality later in life.

Hate Autism? Love Autism?

There have been a lot of discussions (quite heated actually) around the autism community because some parents are claiming to hate autism, and really… I can’t blame them. For some people, their child will likely live in a home for the rest of their lives. They’ll be bullied, they’ll have no job, no family… they’ll miss out on a lot in life.

Still though, in this case, I think it’s a label issue more than anything.

I look at this way: when a child misbehaves or does something wrong, “experts” and books teach us that as parents, we should redirect or encourage proper behavior… but if need be, point out how what they did was bad, not that they were bad. Or to put it another way, never tell your child they are bad, but rather that the action they took was wrong.

In this way, as an example, hitting is bad, not the child that did the hitting.

To go back to autism, I think the parents hate that their children can not speak, can not integrate into society, can not do all of the things the parent wishes they could do… due to the autism. They hate the barriers, the severity… not the actual autism itself.

They hate that they haven’t found a way to communicate. Sure Carly Fleischmann (go buy her book by the way!) found a way to communicate despite being unable to speak… but to a parent that has yet to find a way with their own child, they’ll hate it.

They’ll hate that they can’t communicate. They’ll say that they hate autism… it’s an emotional response.

It doesn’t make it right, any more than telling your child that they’re bad when they do a bad thing. The experts are right. It is better to focus on the action than the person. But as an emotional response… it’s understandable, even if not really right.

Labels… sometimes they get mixed up in the heat of the moment.

Person first language

I thought I had finished with this topic when I wrote the last word on person first language… I still share the link to that post with people just about every day. That’s because there are people telling me, almost every day, to refer to autistics one way or another. (some people prefer ‘autistic’ while some people prefer ‘person with autism’)

The fact is, they’re both a label by another name. The person is just as sweet. (notice I didn’t say smell? For those of you that don’t know the reference from the original quote, sorry)

Yes, there is a lot of power in words and choosing which label you want to use does have an impact on how you think about a person. Still though, it doesn’t have an impact on who that person is.

You’ve labeled a person. They’re still a person that doesn’t really reflect the label at all.

I know, some people would and likely will argue with me that it does reflect the person, but going back to the beginning of this post, a title hints but does not tell you the story.

I know some autistics that don’t care what you call them and have no interest in the autism community or advocating at all. They just live their life as a person who lives their life.

For those people, calling them autistic or a person with autism or lazy or big boned or funny looking or anything else doesn’t really tell you anything about the person at all, does it? Maybe to Sherlock Holmes, but for most people, we wouldn’t have a clue where they’ve lived, the type of people they hang out with, what their favorite food is… nothing.

Insisting on a label, or fighting over a label, seems like an odd way to spend your time when you could have been learning the story instead.

A headline

For the most part, I’ve been down playing labels in this post. I don’t want you to think that I am completely dismissing how important they are though. Although, I attribute a lot of that to just how lazy or assuming people are.

The greatest example of this is in the media. I believe we’re all aware of news agencies common practice of “sensationalizing” a headline to grab readers.

I wrote about it in “The truth about how a research study goes from the lab, through the media, to the people” where you can actually see how a story goes from a researcher to the public and just how radically the headline can change over time.

The danger of this, which happens far too often, is that many readers will take the headline and be satisfied with it. They’ll come to conclusions and share it without having ever read the actual story.

This translates into the real world of labels where, when someone says autism, a person might automatically think they know all about a person. They assume that an autistic will be prone to violent meltdowns, they won’t look a person in the eye, they won’t be able to talk properly or at all, they’ll spin around or flap their hands a lot… any number of things.

Find any 5 autistics that you can and you’ll quickly find that these generalizations are just silly. Sure, one or two might do one or two of the things I’ve listed… but more than likely, all 5 will be completely different where none of which do all of those things.

And those are just possible autistic behaviors. That is a far stretch from assuming you know a person.

So yes, labels have their power, because people want to make assumptions based on them. They want to know the story before they know the story.

A label

amazing

Love the shirt!

A label is just a label… it’s a short form reference to an entire story that you have yet to discover.

There’s a whole lot more to The Lord of the Rings than it’s title and there’s a lot more to a person than the title you label them by.

So make sure you use a label properly, use the label you prefer most and most of all… never assume you know the story based on the label.

My son’s label is ‘Amazing’. If you want to know why, you’ll have to get to know him and learn his story.

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Does person first language indicate a lack of acceptance?

By on September 2, 2011 in Autism

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.

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The last word on “person first language”

By on July 12, 2011 in Autism

I am writing this for one reason: far too many people tell me what to say, so instead of explaining to everyone, I’ll just give you this link. Please read.

The idea

The idea behind “person first language” is that you put the person first, for example: person with autism. This emphasizes the person and not the disorder. Fine. Or so I thought.

But then I heard from several (and by several, I mean a LOT) of “people with autism” who specifically told me that they prefer the term “autistic” because autism is very much a part of who they are and how they perceive the world. They accept it, they embrace it and they want to be known as such. Fine. Or so I thought.

Not every “autistic” feels that way. Some actually do prefer “person with autism” because they hate how much autism has made their life suck (their words, not mine, really). Fine?

For some education systems, the teachers are actually told to use “person first language” because that’s what some parents insist on and it’s best that the education system not aggravate the parents. Fine.

So which did you tell me to do?

Here’s the thing. If I have dozens, even hundreds of “autistics” tell me to call them “autistics” because it’s what they want and then I have dozens, even hundreds of parents tell me to use “person with autism” because it’s what they want…. who do I side with?

Nobody.

I don’t take sides. First of all, it’s just ridiculous anyway. Seriously, is this what we spend our time on? Is this really a reason to get mad at each other? Can something this childish really begin to divide a community?

Well, no. The truth is, there’s a third group of people. They’re the “I don’t care” group. I love this group.

For most “autistics”, which are “people with autism”… they don’t care. Actually, they’d prefer you call them by their name. They’re more likely to respond. Further more, person, people, person of humanitarian decent…  you know, what ever. It really doesn’t much matter.

For most parents of “autistic” children, which are “children with autism”… they don’t care. Again, using their name is generally the best option. But those parents really don’t mind how you refer to their children so long as you do it politely, nicely and with respect. They are their children after all.

I fall into the “I don’t care” group myself but in a way, I do care. I mean, if someone tells me they prefer one or the other, I’ll do my best to use that one method with that one person. I respect their wishes. But if that person is in a group of people, all of whom have various wishes or don’t care…. well, be ready for a mixed bag of terminology.

Don’t tell me how to speak, I don’t tell you how to dress

dont tell me what to doQuite frankly, I find it rude to tell me how I am to refer to my own child. Who are you anyway?

When my son comes to that point, if he does, and he tells me he prefers one way or another… you can bet your life I’ll stick to that one term…. with him. I’ll still use another term with another person if it’s what that person prefers.

In the mean time, until he tells me, or others tell me which they prefer, I’ll use the term that best fits the sentence. Because “the journey of my autistic child” sounds far better than “the journey of my child of which has autism”. That can’t be right.

Anyway, if you’re reading this because you’ve told me what to say, please visit the closest Walmart, buy some overalls, cowboy boots, pink shirt with the ruffles and the biggest hat you can find and wear that. Because I feel it’s only fair that you do something for me too.

It’s not that I don’t value your wishes, it’s not that I don’t understand exactly where you’re coming from. I do. And if the entire world said in one unanimous voice that it should be one way… then I would abide by that.

But it’s not that simple. I don’t make one group of people mad for the sake of making another group happy. There’s far better things to focus on that can benefit all people than this.

Thanks for reading.

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