Getting Past the Definitions and Identities

If you have not been diagnosed with autism, and your child has, what was the first thing you thought when you got your child’s diagnosis? I’d be willing to bet it was something like, “My child has autism, they will not be defined by autism , therefore they are not autistic.” I did this very thing. And for the last decade raising our child, we’ve used “Max has autism” because we didn’t want autism to define him. But was that the right thing to do?

Our son Max didn’t have a voice to speak for himself when he was diagnosed. We made the decision for him on how we would address autism as it relates to his identity. We didn’t surround ourselves with too many other families in the same situation – we live in a small town. We don’t know any adults that have been diagnosed. Our world, you could say, is a little naive to reality when it comes to this issue. I now believe we were incorrect in the way we’ve identified our son all these years.

A pretty revealing poll posted on Twitter by Autism Speaks blows this issue to pieces. And as I’ve increased my social presence as of late, My eyes have been opened to what is really going on with this topic. Most of the autistic people that voted are very firm on the matter, and some even find it offensive to be having the conversation. They are autistic – plain and simple. As I read through the comments, I got the sense that autistic people feel averse to the notion of “having autism” because it DOESN’T define them, just like “having a cold” doesn’t define anyone. Many spoke of autism being woven into the fabric of every aspect about themselves. To say they have autism implies that it is separate, detached from them and it’s something the carry around. Even worse, it implies that if they “have it”, it’s something they can get rid of. Think of calling your German cousin “your cousin with Germanness.”

Most of the non-autistic people that voted wanted the person to be identified first, then the characteristic. Like “my son has autism”. Compared to the detailed explanation from those diagnosed, what does that say about all of the responses from us that haven’t been diagnosed?

It was very convicting for me as a parent to read through the responses to the poll. I realized that I had made that decision for my son – he didn’t get a say in it. I realized that by trying to identify my son first, then his difference, that I had actually revealed my own problem with my own views on an entire people group. My original intent was to protect my son, but from what? Something I thought was wrong? I haven’t been diagnosed, so autism must be some lesser thing, right? I should protect my son from this lesser thing.

I’m embarrassed at myself. Autism is not lesser. If anything, it’s more. I know this and I’m continually fascinated by autism and the traits of my boy. Autism is different, yes. But different is good. We need to embrace it, not try to protect our kids from it. Yes, raising an autistic child is one of the most challenging things a parent can face, but that doesn’t put autistic people in a lesser or greater category. It’s just different. Let’s not identify or define each other incorrectly.

My mind is blown. I clearly have a lot to learn. Thank you to the older autistic community in helping correct my course. I’m sorry when I get it wrong.

And I’m sorry, Max. You’ll have your own voice on this matter and many others some day very soon. I’m sorry for speaking for you, even though I was trying to protect you. I’m sure you’ll let your dad know when to shut up when you have that voice. Just please never lose sight of how much I love you.


Here is the link to the poll on Autism Speak’s Twitter feed.