Tuesday, June 11, 2013

Be Kind: Part One -- Autistic vs. Having Autism

[Originally posted on 6/11/13]

My whole life I have been such a peace maker and very passive. Ive always hated confrontation and would just make myself suck it up whenever someone or something bothered me. I just took it. I want my children to stand up for themselves and for what is right. I need to lead by example. I decided if i dont like something, i need to try to change it.

Most of you (non ASD families) are not aware that many of the terms you use are very offensive, and ive never said anything for fear of embarrassing someone or upsetting them. It is not doing anyone any good not informing them of their mistake, its only because you do not know, that you make the mistake to begin with. So here it goes...

Be Polite: Part One -- Autistic vs. Having Autism

Using the term "Autistic" over the term "Has Autism" is very controversial in the ASD "community." I have tried hard to just realize that people who don't deal with ASD in their homes do not understand that they are being offenseive. But i cringe and automatically get defensive when you say that my son is "Autistic" or use the word "Autistic" in general. I dont feel like i should have to cringe anymore. 

So as i mentioned the term is very controversial in the ASD community. The people who use the word "Autistic" to describe themselves and/or their children, are the same ones who find it a blessing to "be Autistic." They get very upset when they hear mothers like me, who are sad, angry or upset about their child having Autism. But to THOSE people who find it a "blessing," they obviously do not live the same life i do. They are obviously able to function and communicate in a world where my son can not. To be "Autistic" is a blessing to them. In our home it is not. In our home it is a cause for heartache and a very difficult life for not only Jeremy and I but mostly our sweet Recker. Our sweet Recker is the one who has to endure this trial in his life. Yes, TRIAL. How can you consider not being able to communicate, having an extremely hard time being out in public places because of his ASD & SPD, the looks he gets for his stimming in public, how are those things BLESSINGS? This does not mean we would want to change him or love Recker more any other way, it simply means that Autism has made our lives extremely difficult, and challenging for Recker. He has to deal with things that no 3 year old boy should have to deal with.

We do not use the word Autistic to describe Recker. Autism is not WHO Recker is. He is so much more than that. 

First and foremost....

He is a 3 year old boy.
He is a brother, son, nephew, cousin and grandson.
He is a little blondie.
He is a comedian.
He is a cuddler, kisser and sweetheart.
He is a lover of water.
He is brave.
He is strong and fast.
He is a friend to everyone.
He is Recker.
Those are the things we use to describe him. 

He is not Autistic, he "has Autism." 

It may seem odd to you and that there is not really a difference. But just a few little words can make a HUGE difference. The way we arrange words can change the whole meaning of something and the way we look at and feel towards it. By using the terminology "has autism" it puts the person first before the disability or condition, and emphasizes the worth of the individual as a person not just a condition. 

For example cancer patients are referred to as "people with cancer" or  "people who have cancer" as opposed to "cancerous people." Do you see how HUGE a difference just rearranging your words can make? PUT THE PERSON BEFORE THE DISABILITY. 

Person-first language is a philosophy of putting individuals before their disability. As you will see, this is about more than just language; it goes deeper into our attitudes toward others and how those attitudes translate into action. The label or identification that one’s condition or disability receives from a doctor is just that: a label. It is a way of broadly characterizing a group of symptoms under a recognizable and universal description so that treatment and services can be provided. It doesn’t speak to a person’s value or abilities. However, historically those with disabilities have been characterized as broken or frail, which makes it easy to see the impact language has on how accepted individuals are in their communities. Society at large has used these labels as a way of marginalizing others’ potential and fitting them into a neat little box from which they will never break free (Snow, 2010).

Please be considerate next time you are speaking to or about someone with Autism. Remember that, their disability isnt who they are. They are someone of value and worth far beyond their disability or disease. 

Recker HAS Autism. He is not Autistic.

Snow, K. (2010) To ensure inclusion, freedom, and respect for all, it’s time to embrace people first language. Retrieved on March 3, 2011 from www.disabilityisnatural.com.


  1. I don't use the term my son is autistic but that he is on the spectrum of autism. I understand where you are coming from. People tend to get things for Keegan that help him in his battle everyday instead of getting him things that he just normally loves. I mean just because he is on the spectrum must mean he doesn't like Pixar movies, or playing with cars, or doing things his brother does as well. It doesn't define him but it is apart of him. He is on the spectrum there for it has taken over our whole life. I guess I have had my share of denial and battling this idea that my son his whole life will struggle. Do I believe it's a blessing? I don't know. Is it a blessing that men become blind and compose great symphonies?

  2. There are things are boys will face that will be harder to deal with then many children. But I do believe no matter how hard their daily struggle is they have something extra in them. They have an extra light. They see things like no one else, they have a mind to accept others when we so called "normal" folk can't.

  3. Kayla, this made me cry for a number of reasons but mostly it was yet another post of yours where I was like, "oh my gosh I FEEL the EXACT same way". I read a lot of things on autism related websites that have articles with people with autism (usually teenagers and adults) and it is all about how they are perfect the way they are and they don't need to be cured. All I think is I would love for Brody to progress that he not only feels that way but we, as parents, feel that way. It is not a blessing or wonderful. I wish I could sit down and talk with Brody and I wish I could have not gone through almost 2 years of him playing with feces or currently where he does not interact whatsoever with his brother. There are moments of light and happiness but that seems to be the part of Brody that shines past the autism. Thanks Kayla cause every time I read your Facebook posts or blog posts I feel less alone.

  4. As his bonbon (grandmother) Recker is so much more than a child with Autism--I love this post. When I look into this sweet boys eyes, I see a tenderness I've never seen in any other child's eyes. I see a 5 year old boy who want to wrestle with his uncles, I see a sweet tooth, a I see a Child of God -- I love him dearly --