Why Talking About Autism Is So Complicated

One of my sons is autistic.

This isn’t news to many people I know personally, and it’s not hard to figure out who for those who follow me on instagram.

Sometimes people tell me he doesn’t “look” autistic.  Although it’s a slightly awkward comment, I see what they are saying. Autism doesn’t come with physical traits, although there are some tell-tale quirks. He doesn’t always look autistic… but sometimes he does. It depends on where we are, what we’re doing, and what kind of day he’s having.

There is a very real chance that my son will never “blend in” with the neurotypical world. As he gets older some traits are more pronounced and some less so.

I struggle with talking about autism for a few reasons. Here they are in no particular order.

I want my son to own his autism.  If my son chooses to identify as an Autistic, and wear his autism with a badge of pride, I want him to feel empowered to do so.  If my son wants to be viewed with a more person-first identity… a person who has autism, I want to be respectful of that.  As my son gets older, he will form his own opinions of self. And while I want him to be proud of who he is, I realize this can come in many forms. I want to give him the space to form his own identity without too heavy an influence from me.

I don’t want my son to think we are hiding his autism.  I just want him to feel in control of his personal information as much as a social media addicted millennial mother can allow.

At the same time, parenting is complicated. Add something like autism into the mix and it gets exponentially more complicated. Sometimes, I want to talk about autism with others to share the unique experience of loving and raising a person with autism.

In our house, autism is not a bad thing. I don’t hate autism… in fact, there are many amazing things about autism.  But this is pretty easy for me to say; I might have a very different perspective if my child were less verbal, or tended to run or wander away, if I worried about his safety when he had a meltdown, or the safety of others.  While we want to instill pride and confidence in our son, I can’t pretend that autism isn’t difficult and much different for many other families. I view autism through a fairly privileged lense; when I talk about autism, I have to be aware of that.

We want him to get assistance when he needs it, but we also don’t want him to feel like we want to “fix” him.

We want people to look at him for who he is, with or without the label depending on his preference, not ours.

So… until the day that my son can tell me his preferences, I’ll be pretty tight lipped on the more personal autism stuff.

But I made a little request on my personal Facebook page and I’ll make it here too:

Whatever your perspective on autism… whatever you think the cause, or what you think autism “looks like”, whether you have an idea of what autism is all about or not, seek some new information today.

Here are a few places to start:

Autistic Self Advocacy Network

Autism Network International

Blogs by Autistic Bloggers

Have a question about autism? “Ask an Autistic” YouTube vlogs  by Amethyst Schaber

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5 thoughts on “Why Talking About Autism Is So Complicated

  1. Thank you for the article. I always love what you write, mainly because I can feel how deeply you care about your family. I have worked with a number of kids with some form of autism and they were also incredibly gifted and talented in other ways. It’s refreshing to hear the parent’s side of things. You have a beautiful family. ❤

  2. My son has Aspergers. I homeschooled him from 4th grade through an extra long 12th grade. It was the best decision we could have made for him. He is working hard at his first year of college 4.5 hrs from home! He doesn’t “look” like he has autism either *cringe*. What he does look like to me and all his friends is a quirky, geeky, video game loving computer science major with a concentration in game design and a minor in communications. I love your words about allowing your son to choose his identity. I have no idea if my son’s friends know he has Aspergers or not but that’s for him to share, people to wonder and never to get in his way. Keep up the good work!

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