it’s in a word: autistic vs. has autism

its in a word autistic vs has autism
You may follow my blog and wonder why I say “(insert name) is autistic,” when you feel strongly it should be, “(insert name) has autism.” The second is described as being person-first language. I’ve had discussions with parents and grandparents who are strong proponents of the person-first language. I understand this. Not wanting your child or grandchild to be defined by one aspect of their personhood is admirable, but when we really consider what saying, “(insert name) is autistic” means, we can see that it’s only a part of who they are, not the whole.

When I began this journey, I solely used the phrase “has autism,” I felt it was the respectful way to address someone on the spectrum, I felt my son shouldn’t be called autistic. I listened and was part of the discussions about person-first language. I believed saying, has autism was much more considerate than saying they were autistic.

Then something changed. I started listening to the voices of autistic adults. Those adults who have been there, done that, lived with autism, dealt with onlookers, naysayers, and abuse, say they want to be called autistic and call themselves autistic. I’m not saying this is true of every autistic adult, however, there are many who’ve voiced their opinion on the word. This is what they want.

I feel it’s important to look at others who’ve forged the road ahead of us. It’s especially true when we don’t have the disABILITY, but are trying to raise a child who does. So, I began to really consider what these autistic adults were saying. Why did they feel so strongly about “autistic” versus “have autism”? What was their reasoning? And, what should I do about it?

Autistic adults make the point that you can’t separate autism from the person, thus the person is autistic, they don’t simply have autism. Jess at A Diary of a Mom writes, “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?’”

About the word, autistic, that many feel grates at their ears and defines their children, Jess adds a great point. She says, “Calling a person Autistic doesn’t mean that’s all they are.” If you say someone is intelligent, don’t they also have the ability to be generous, thoughtful, or artistic?

I would never say that autistic is all my son, Jeremiah, is. Absolutely not. But I can’t deny that autism is a big part of who he is. I want to say, but don’t have the ability to, that he would be very different if it wasn’t for his autism. But, I can’t know can I? I can’t know because he’s autistic. That autism makes up so much of who he is, how he functions, how he responds to me, what he does, how he feels. It’s in every part of him. And it’s not bad. It’s really beautiful.

Side note: I found this awesome quote by Walk Down Autism Lane on Pinterest that speaks my heart,

“They said he was off in his own little world…But, he held my hand and took me with him. It was beautiful.”

I quote Jess because she’s had tremendous more opportunities than I to speak with autistic adults. She also says about the matter, “So just as one can be described as Jewish or Catholic 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.” In, Why I Dislike Person-First Language, Jim Sinclair, an autistic adult, says something very profound, “It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.”
Jim Sinclair quote

Sinclair explains how autism is essential to who he is: “Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society.  It even affects how we relate to our own bodies. If I did not have an autistic brain, the person that I am would not exist. I am autistic because autism is an essential feature of me as a person.”

For me, I don’t stand on either autistic or has autism as being the end-all. I don’t like division in the autism community, just as I don’t like it in the adoption community. I use both references interchangeably, but find myself using autistic more often. I’m not offended when someone says my son has autism or when they refer to their child in the same way. We each have our reasoning for using certain terminology.

I often see that those who use the term “has autism” as those who want to take autism away from their child. There are autistic adults who balk at this, yet I know that when your child has severe needs you only want them to feel better, to not struggle in society, not be looked down upon, not battle sensory issues. We need to look at the wonderful attributes of our children no matter where they fall on the spectrum, they are humans with dignity.

We need to respect each other and where we each come from, what autism we’re each living with.

So what do you do? As I’ve said, each person will have their opinion of how they want to be referred to, but many adults prefer the term “autistic.” Many parents and grandparents prefer you say their child “has autism.” I would recommend going with what you’re comfortable with or what the person living with autism has requested.

This post is only meant to share with you why I use the terminology I do, so I can refer others here when I don’t have a short answer. It’s also meant to educate and share a wider view, one that comes from those who’ve walked our child’s path already.

The quotes from Jess were taken from her post Person First on A Diary of a Mom, which I recommend reading in it’s full context.

*Please see the CONTENTS page for links to more posts on autism, adoption, and foster care.


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is changing Autism acceptable?

How much can you change Autism, yet keep
Last week in the post, Are Autism Behaviors Annoying, I mentioned a conversation which took place between me and a family member about Autism. You can read that post to see where this relative, Joan, was coming from.

Joan continued from the “…annoying,” comment to telling me about an acquaintance they recently ran into. This acquaintance (someone I also know), Lacy*, has a son, TJ*, who has Autism.

TJ’s mom, Lacy, had chosen to open a store where her son was present during business hours. Lacy cried herself to sleep every night because of the horrible comments the customers made about her son.

She couldn’t handle the criticism.

I understand that it’s so hard to hear comments about your child, or about Autism behaviors in general when your child is on the Spectrum. I haven’t spoken with her about it, so I don’t know if she felt she couldn’t run a business with her son present, or if the comments made her feel bad. Maybe she felt for her son and what he was going through. Whatever her reasons, it’s important that as Autism parents we ask ourselves where our focus lies.

Is our focus in “curing” our child so we can live “normal” lives? Or is our focus to help our child be the happiest they can be? Do we want our child to have different behaviors so we can function in the way we want, or is it because we think it will be best for our child in the end. As I’ve talked to adults on the Spectrum, I’ve learned that so much of what some Autism parents want is not what the Autism person wants.

Forcing them to fit in isn’t necessarily what’s best for them.

I’d already heard about what Lacy had done with her son to help his is our goal in changing Autism to make our life easierAutism, so I said to Joan, “I really don’t want to ‘cure’ Jeremiah’s Autism.” She looked at me as though I was an alien who had fallen from another planet. “Why not??” I answered, “Well, I’ve talked to many adults with Autism, and they like who they are, they don’t want to be changed. And second, I like who Jeremiah is, I feel he’d be very different if his Autism was taken away. His Autism largely makes him who he is.” Joan disagreed and said she thought he’d have the same personality without Autism.

I can see where it would be impossible for someone to see it from my perspective if they aren’t involved in the Autism community, don’t talk to others who are Autistic, and see the positive attributes of Autism. So many want Autism to go away, as I’ll discuss a little later.

Joan explained again what the doctor had done with TJ. He used wires which connected to TJ’s head while TJ held a dog in his lap. A video played on the screen, and anytime his brain made a connection on the “right” pathway, the dog danced in his lap, thus reinforcing that “right” pathway. Here’s my concern I shared with her, “I would have it done on myself before I ever let them do it on Jeremiah.” She gave me an odd look. I added, “I would want to make sure it didn’t hurt him. Shock therapy is being used on Autistic people and it’s not okay, so I would want to make sure it’s not painful or irritating.”

Joan replied, “Oh, it’s perfectly safe.” Well, that’s nice, but I added that there are those who do NOT practice safe and beneficial therapy.

My point of view on Autism is changing drastically, and this is an example of where people go blindly into situations and they forget to contemplate the desires of the Autistic person.

There are two schools of thought on Autism, those who want to “cure” or “fix” it, and those who don’t. Okay, maybe there are a few who fall in the middle. I was more on the side of fixing it until I began immersing myself in the Autism world by living it, studying it, and writing about it, and communicating with Autistic adults. I began to see how truly unique my son is and how much his Autism affects who he is.

Heck, we all have a little Autism in us.

In reading and talking with adult Autistics I hear many of them don’t want their Autism “cured” and some blast groups such as Autism Speaks for their drive to “cure” Autism. They like who they are. As a result of listening to their ideas, I began to see more and more of the qualities Jeremiah possesses.

I’ve also looked at the way Jeremiah has changed me, and I see how it’s drastically formed who his sister is. I feel I’m so different because of him. Yes, doing foster care changed me, but having two children with disorders and disabilities has wrecked my world, in a good way. A life changing way. My perspective of the world has changed, I have more compassion, I know that others may be dealing with underlying issues and therefore exhibit diverse behaviors. Although I have God given sensitivities, I have been made more sensitive to both of my children’s needs, beyond what would have normal for me.

Maybe I’m scared to remove Autism because the child I love so dearly would be different.

I don’t want to change Jeremiah, I adore him. It would be like me wanting to drastically change who someone else is, although I may not like certain aspects of who they are, it wouldn’t be fair for me to change them, and frankly I can’t.

The world needs to change, and Autism is one way to do that.
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*Names have been changed to protect privacy.

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