My Son Has Autism, But I Will Not Share His Personal Struggles

My Son Has Autism, But I Will Not Share His Personal Struggles

Share-The-Best-Parts-autism-1
Katie Cloyd/Instagram

My son is three and a half years old. He loves Mickey Mouse, running around our house in his underpants, and building things out of any kind of blocks. He hates rice, being licked by the family dog, and hearing the word “no” — especially if he just asked for a treat.

Just before he turned three, Walker was diagnosed with autism spectrum disorder. The diagnosis was a formality because Walker made it pretty clear from day one of his life that he was neurodivergent. We just needed a doctor to say it so that our insurance would pay for things like speech and occupational therapy.

I won’t pretend the diagnosis was easy for me to hear. I was initially worried that I was unprepared and wouldn’t be able to figure out how to support him in reaching his dreams and goals. Autism sounded so complicated when I didn’t know much about it.

As it turns out, what my son needed from me wasn’t complicated. He needed what every kid needs. All Walker needed from me was to keep doing exactly what I was doing: loving him fiercely and following his lead. He knows how to be exactly who he is meant to be. I just have to be on his side, always.

And he makes it easy for me.

Walker is light. He just radiates joy and energy and delight everywhere he goes. I can’t say enough good things about him. I know he’s my baby, but even if he wasn’t, I think I would be absolutely tickled by him. When he throws his little head back and lets out his infectious giggle, nobody with a soul can help but smile. He took his time learning how to speak, but now that he knows how to tell us what he’s thinking, he says the funniest things. I just adore him. He’s a gem.

Like many parents, I have chosen to share some stories about Walker’s life online. I also share about my older son who is neurotypical. Sometimes the stories are funny or sad, but mostly they’re just glimpses into our life and relatable mom stuff. I’ll share the annoying stuff, the universal “why are kids so gross?” kind of things, and the little frustrations that make parenthood such a wild ride.

What you will never see on my social media, though, is detailed documentation of my children’s worst days, their hardest moments, and their deepest struggles.

My son has some special considerations, but he is a human being. He will grow into an adult someday. There are parts of his story that are his alone.

Once in a while, I get a message from another parent of an autistic child, and they will say something along the lines of, “It’s not fair that you paint a rosy picture of autism by acting like your son is doing so well. Stories like yours only make people doubt how difficult it can be for parents of kids with autism.”

My first reaction to messages like this is always defensive. I kind of want to say, “Kids with autism don’t exist for people to gawk at online. Who cares what kind of picture I paint of my OWN CHILD? My kid doesn’t owe anybody anything, and neither do I.”

But I never say that because the truth is, I actually do understand what these parents are saying. Honestly. I believe them fully when they say that they don’t see their children reflected in my stories. I acknowledge that Walker seems to be walking an easier path than some kids whose autism presents in other ways.

Part of that is because he is only three years old. There is very little social pressure on a toddler. Part of it is just the nature of autism. It’s a vast spectrum, and every autistic person is different. Walker’s autism doesn’t really present in a way that makes our daily life much different than it was before he came along. We make some adjustments for him occasionally, but he’s generally a pretty laid back, go-with-the-flow little guy.

I am not “acting like” my son is doing well or painting a dishonestly rosy picture.

Every story I tell is true.

But there are absolutely things about both of my children than I don’t share. I never will. It has nothing to do with protecting some kind of image. It has everything to do with protecting my sons.  Nobody will ever convince me that I have to chronicle my children’s hardest moments in order to maintain my integrity and authenticity. I am careful to protect my children’s stories that are not mine to tell, and that will never change.

Especially for Walker. Sure, he has some special considerations, but he is a human being. He will grow into an adult someday. There are parts of his story that are his alone.

I will always share when any child of mine kicks butt at life and does something amazing. My kid with food aversion ate pierogi for the first time, and I shouted it from the rooftops! Bring me your kid’s accomplishments, too! I am into all the parental celebrations. I will be the first one to high five you when your kid eats broccoli, gets on the honor roll or learns to tie his shoes. Heck, I’ll give you a WOO HOO when your middle-schooler starts wearing deodorant without a reminder. Whatever your parenting victory is, come to me with all that good stuff. We celebrate here.

If you’re hoping for videos of an autistic child in the middle of a meltdown, or photos of a crying mom with a caption about her child’s difficult day, my stories won’t do it for you.

But I believe my children have the right to be protected in their most vulnerable moments, and that includes knowing that their mom is not retelling those moments to thousands of internet strangers later.

If you’re hoping for videos of an autistic child in the middle of a meltdown, or photos of a crying mom with a caption about her child’s difficult day, my stories won’t do it for you.

I’m not necessarily saying there is no place for sharing our struggles. I’m sure content like that provides a sense of solidarity for some people, and maybe that is what they need. But I get very uncomfortable about intimate depictions of struggles when it involves a child who cannot consent to sharing on that level. That doesn’t mean it’s objectively wrong. It’s just not for me. I can’t tell another parent how to share their children. We all have to work that out for ourselves.

But I know how I want to share my children and laying their tough stuff out on the internet doesn’t feel right. I’ll stick with the sharing the good stuff.

Being positive is not the same as faking it for Facebook. I truly have an unlimited supply of really upbeat stories about Walker because Walker is awesome.

Autistic people are … people. I’m not sure how else to put it. Every autistic person is wholly unique, and that means there is no standard by which you can judge whether a person is “acting autistic enough.” Sometimes Walker acts just like his neurotypical peers. Sometimes he really, really doesn’t. That’s because he isn’t a different species. He’s just a little person with atypical wiring, figuring out what feels right to him in a series of new days he’s never been to before.

No internet stranger is qualified to decide if I’m sharing enough of his struggle to paint an accurate picture of autism. Autism is a neurological difference. Doctors diagnose it by observing behaviors, but it is not a set series of traits and behaviors. Every story about Walker is a true story about a person with autism, but every story about Walker isn’t meant to represent the entire autism spectrum.

I have never claimed to represent the autistic community. They do that perfectly well for themselves. If you want to know about autism, you really don’t have to ask the mom of an autistic child for info. You can totally find tons of first-person information that autistic teens and adults share online.

I just share stories about Walker. Walker is awesome and autistic, and those things aren’t despite or because of one another. They both just are.

That’s all anyone needs to know.