What’s it like parenting a child with autism?
Every parent has a different experience and a different story to tell. Every parent, whether they have a special needs child or not, faces struggles and triumphs.
Every second, every minute, and every day can be very different. There are some universal experiences we as parents share—whether our children have autism or not—and then there are things that even the most empathetic person can’t understand without having a special needs child.
Sometimes it’s an amazing journey.
Sometimes it’s painfully challenging.
At times it’s incredibly rewarding.
At times it’s a huge struggle.
On most days it’s a healthy variation of all of these and more.
Autism looks completely different in every person on the spectrum. There’s a saying that if you’ve met one person with autism, you’ve met one person with autism.
That said, meet one person with autism: our son Evan. He was diagnosed a month after he turned two. He’s now eight.
These photos of Evan were taken over the course of a single day to show what living with autism looks like for us.
Evan loves to play and be silly. He likes swimming, gymnastics, singing, watching videos on YouTube, and playing video games. He also loves lights bulbs, elevators, the color purple, and curly hair. He hates sirens, spider webs, and when lights are turned off (unless he’s the one turning them off). Like many children with autism, Evan has a hard time with social cues and needs to be taught how to initiate conversations. Without some coaching, every conversation would start with “Do you have spider webs in your basement?” or “What kind of lights do you have at your house?”
Evan and Noah are just 15 months apart. Yes, they annoy each other a lot but they also like to spend time together. Here they are watching TV and unaware of the camera. Evan spent the first half of his life oblivious to those that loved him. Now he’s happiest when he’s with family or friends.
Many individuals on the autism spectrum have sensory processing issues. This means that a person can be extremely sensitive to sights, sounds, smells or textures. Evan hates the sound of sirens and unfortunately he hears them frequently. When he was younger, the sound of a siren (no matter how faint) would send him into an all-out tantrum that took hours to recover from. Now a siren makes him angry and agitated until it stops. Sometimes he’s able to cover his ears until it stops without showing any other negative behaviors.
This afternoon was not a good one for Evan. What causes a meltdown one day doesn’t the next. Today he was really upset about playing in the basement alone. Ironically, as I’m typing, he’s alone downstairs singing Let It Go loud enough for the entire neighborhood to hear.
Evan is afraid of the moon, but only at night, and can’t explain why. When he sees it during the day, he’s excited he found it. When he’s outside in the evening, Evan insists on walking with his arm covering his eyes so he can’t possibly see the moon. When we ask him, he says it’s too bright at nighttime. Even on the cloudiest of nights, he refuses to put his arm down. Because of his fear he feels safest when he falls asleep with his light on and insists on sleeping with a flashlight.
Evan loves technology. Some of his favorite games include Temple Run and Minecraft. He also likes to watch videos about different kinds of light bulbs on YouTube. Now, he will tell you that he is a lighting expert. It seems like we cannot go anywhere without Evan identifying the fluorescent, incandescent, and CFL light bulbs. To be honest, I still don’t know the difference.
As Autism Awareness month comes to a close, thank you for taking the time to meet one person with autism.
—Jen Lovy, Beaumont Parenting Program Volunteer
Editor’s Note: Subscribe to our blog to read posts throughout April for more resources and about living with autism. You can also search the tag “autism” on our blog. We’d love to hear your story, too. Share it with us in the comments.