I Hate The Struggles That Come With Autism, But Not My Son's Autism

by Pavi Raman
David Jakle / Getty Images

It’s 7 p.m. Your child is yelling his head off because he does not want to hop in the bath. Tears are running down his face leaving clear trails in all the grime. Bribes have been offered. Voices raised in despair. Visual schedules and timers have failed to move him. He does not want to have a bath, and that is it.

You’re exhausted and stunned by the intensity of his tantrum. Unfortunately, you cannot budge, and you cannot give in because you’re scared that it will set a precedent: Mom’s a pushover. But you also know that this tired little boy is soon approaching meltdown junction, where all bets are off and nobody wins.

You take deep breaths and tell yourself it’s not about you right now. How do you help him navigate this? He loves bath time. He loves water. He’d practically stay at the pool if you’d let him. So why is it suddenly so hard for him? Why does this bright boy who can do math in his head and talk at length about how to build an airplane struggle with a simple concept of “grimy body = needs bath.”

It’s impossible to be truly mindful and empathetic at all times. When kids have a meltdown, it’s far more natural to gnash your teeth, blame autism, and hunker down till the storm passes over. Heck, I do that more often than I like to. I’m not one of those evolved moms who have a handy bag of tricks and snippets of wisdom.

But here’s what I do know: Autism cannot be wished away. Some kids outgrow their diagnosis with age. Some kids progress to the point of being virtually indistinguishable from their neurotypical peers. And some kids continue to remain visibly or subtly on the spectrum. The day will come when your child may question you about autism or start to read about it in the media. That’s the day you want to prepare for. That’s the day that’s keeping me from losing my mind and having my own meltdown.

My son already knows the word “autism” pretty well. We have a lot of “autism positive” clothing we all wear. He knows it’s something to do with the way he sees the world. He’s 7, but he knows that he is different. I’ve tried very hard not to show him how much the autism label terrifies me sometimes. On those dark days when it’s an avalanche of upsets and behaviors, I try my hardest not to blame autism because, let’s face it, that would be a very slippery slope. “Oh, he’s not engaging well today — autism!” or “Why won’t he just socialize? Autism.”

By the very nature of how it is defined, I find it easy to use autism as a catchall reservoir of reasons why my son isn’t doing well on any given day. So I work extra hard to look at my son as who he is, autism and all. Sure, he’s autistic. That’s a core part of who he is, but not all that he is! He’s a happy, smiley, moody, chatty, sometimes angry, sometimes feral, always silly, little 7-year-old who also happens to have autism. He is not defined by his diagnosis; rather he uses it both as a strength and as a reason why it’s sometimes okay to have a good old meltdown.

Autism is a warship our kids need to steer all day, every day. Sometimes they take prisoners, and sometimes they get knocked around a bit, but it is an integral part of them. And that is what I try to live by every day. I need to be by his side and help him work out some of the kinks in his day.

But more importantly, I also need to let him feel his way around new experiences and learn to handle some of those new challenges himself. His tears teach him as much as his successes do. As a mom who has an advanced degree in helicopter parenting, that is awfully hard for me to accept. He bounces back easily from those tumultuous moments while I’m still jittery two hours later.

Because again, it’s not about me; it’s about him. He’s the one who has to fight in the trenches, while I stand by in the far outfield. Because when he’s 13 and we have a grown-up discussion about autism, I don’t want him to remember my tears and worries, but rather my awe at how far he has come.

I wipe some of my own invisible tears and sit down on the floor with him. His angry body is starting to calm down. I give him deep squeezes and offer him choices of a quick shower or maybe a plastic bathtub in the backyard. I sprinkle some water on him which makes him giggle. He’s back. He’s happy to jump in the bath I originally ran for him because that’s how fast he can rebound. He will be okay. Tired and spent, but okay.

And so will I.