January 20, 2015

Why I Used to Cringe at the Word 'Autistic,' and Why I Don't Anymore

I used to cringe at the word autistic.  

I hated that word.  

I even had blog draft started called, "Why I Cringe at the Word Autistic."  I asked my family to stop saying it by politely and lovingly telling them that saying my son is autistic is putting a label on him.  It's defining him, when it's really just one part of him.  He is so much more than just an autistic kid.

I have heard the argument that among other examples, people with diabetes say they are diabetic.  Diabetics don't get all bent out of shape about being "labeled."  But that's totally different.  Autism is neurological.  It's developmental.  It's a disability.  There is more of a stigma with autism. 

Autistic also sounds more severe to me.  This may be because up until May 2013, autism and autism spectrum disorder were different diagnoses.  Autism was considered to be more severe.  Now everything upon diagnosis, including Aspergers Syndrome, falls under autism spectrum disorder.

My feelings on this word "autistic" are hard to articulate.  This is why I just had a draft going but had yet to publish anything.  I was still searching for the words.  It boiled down to this, though: Autism not something my son IS.  Autism something my son HAS.  

So, what's the big deal?  It's just one little word, and it's not even meant in a negative way.  If you've never known someone close to you with autism, you probably haven't given this much thought.  But, when something is so close to you, such a big part of your life, impacts your child...your child that you are incredibly protective of, a simple word can stir up emotions.

Here's where this changed for me...

I was reading a blog post about using word "retarded" to refer to a mistake, or something you don't like.  The comments below the post steered in different directions, and "is autistic" vs. "has autism" popped up.  Someone who actually has autism offered her opinion.  When I see someone with autism commenting on the subject, it completely peaks my interest.  Who better to listen to about autism awareness than someone who actually has autism.  Here is what she said:

"I am autistic though.  Not a person 'with' autism.  Autism is not a personality quirk that I carry around with me, it's a part of who I am." 

Now, imagine if someone without autism said this:  

"People are autistic though.  They're not people 'with' autism.  Autism is not a personality quirk that they carry around with them, it's a part of who they are."  

These statements make very different impacts.  Hearing her say it, someone who actually has autism, made all the difference.  I have my own struggles due to my son having autism, but the bigger picture is about him.  One day, when he is able to put his thoughts into words, I have got to ensure that I truly listen to what he has to say, and not get caught up in my own emotions and ideas about what he wants.  After reading her comment and reflecting on it, I have come to the seemingly obviously realization that I will forever ask for his opinion.

I say that I can't imagine my son without autism, yet I was so hung up on the word "autistic." That's not what I'm truly hung up on though.  I'm scared.  I'm afraid that Brandon's peers won't understand him.  I'm afraid that when his teachers talk about him they'll say, "You know, Brandon...the autistic one."  The thing that keeps me up at night is that Brandon's feelings will be hurt because some adult lacks compassion and understanding, or an innocent child just doesn't understand.

After reading this woman's comment, I have changed my perspective.  Being open, and willing to change one's thoughts when warranted, is so important in this special needs world.  Brandon is autistic. As I've said before, that doesn't define him, but it is a part of who he is.  I've known this all along.





3 comments:

  1. Great post, thank you! Very insightful.

    I am waiting for my son to express an opinion on this when he is old enough - whether he wants to say he is Autistic or that he has Autism. Until then, I say he is on the Autism spectrum, and leave it at that. :-)

    ReplyDelete
    Replies
    1. I think that saying "on the autism spectrum" does more for awareness than anything else. It reinforces that it is a spectrum disorder and there is a wide range of symptoms and severity. Thank you for reading! :)

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  2. I know sure that learning that your son has autism can be difficult. I was a special education teacher for almost 20 years, and so I do know many of the academic struggles.
    Now, I am selling autism awareness products at: http://www.thehouseofawareness.com
    I am going to add you blog to a page on my site.
    Hope you will check out our site.

    ReplyDelete

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