Updated: August 21, 2015
Originally Published: August 5, 2015
When my son first stepped into kindergarten with his aide, I heard the phrase “He looks so normal” more times than I could count. And yes, he does look “normal”—whatever that means. He appears to be developing just like any other child, as if there’s nothing different about him. I’d nod along and say, “I know, right?!?” just as confused as they were. The thing is, my son’s challenges are invisible. He has autism, sensory processing disorder, and anxiety. You can’t visibly see these conditions, which I believe is what people mean when they remark on his normalcy—a phrase that often raises eyebrows in the autism community.
“Why does he need an aide?” one mom asked. “Because he’s an escape artist—he could give Houdini a run for his money!” I replied, feeling oddly proud of my son’s knack for eluding capture. He does require support, but in some ways, he’s also thriving. Still, how do you explain that?
“What a chatterbox he is! And the movie quotes—he just can’t stop!” Yes, he’s verbal, but that’s echolalia for you.
“Are you sure he’s autistic?” Yes, he has that diagnosis. He’s on the autism spectrum. I’m a proud mom of a boy with autism.
Honestly, I was uncertain about what to say or how to respond to others. I wasn’t familiar with the politically correct language or the unwritten rules. We simply conversed and connected—mothers sharing a bond because our kids were in the same school. I never viewed my son’s autism as a label; it was just part of who he is, and I spoke about it openly. I shared what I learned as I went along. Communication was key.
These moms watched without judgment when my son had a meltdown over not wanting to wear matching shirts on a field trip. One mom even shared that she experiences extreme anxiety herself when my son had a panic attack before a Halloween parade. We celebrated milestones together, like the time he participated in the jog-a-thon fundraiser independently for the first time in fourth grade.
When I couldn’t be there, I’d get updates like, “Your son was fantastic at the school party today!” They’d send pictures, showing him off to the side or maybe clinging to his aide, but he was there—and he was enjoying himself. They kept an eye on him.
“Your son is hanging out with a bully,” one mom warned me. “I saw him playing with two girls at lunch!” they would cheer when he made strides. “I noticed your son pacing alone during an assembly,” they’d report, helping me stay informed about school compliance.
These moms didn’t know much about autism but bravely chose to ask questions and engage in conversation. They embraced my son with open arms, becoming my eyes and ears when I couldn’t be there. They invited him to birthday parties and included him in school events.
Then there were those who didn’t ask. They’d stare or whisper to each other, avoiding eye contact. I’d approach them, initiating conversations about autism. Most were receptive. Many people are kind and want to include others, but they often hesitate to ask questions for fear of sounding ignorant. They want to help; they just need a little nudge.
Just the other week, I received a text: “Did you know your son is here?” accompanied by a photo. He had taken our local shuttle to a grocery store after school—an indication of his growing independence. He was supposed to be at the park just two blocks from home. That mom was still looking out for him, even though our kids no longer attend the same school. I am so incredibly grateful.
What if we hadn’t talked years ago when my son wouldn’t use the boys’ bathroom until they painted fish on the walls because he thought there were fish in the girls’ restroom? “Why is he rocking? Does he always pace like that? Is he OK?” He’s fine. He’s just stimming. Did you know that many people stim by chewing pencils or bouncing their legs while seated? It’s a form of self-soothing. It’s perfectly normal to talk about it.
I didn’t have to worry about my son being bullied. That’s a big deal. In my community, where openness about autism was encouraged, my son was watched over, cared for, and included. Most kids learned about autism and accepted him as he is. Now that he’s in junior high, I miss those protective days. There are bullies now, jabs, and jokes that just aren’t funny.
“Have you tried the gluten-free/casein-free diet?” Yes, but sticking to it is tough and pricey—my son loves pizza. “Did it cure your child?” Oh, please don’t use that word! Yes, we tried the diet, which did help with some digestive issues, but he still has autism.
While I’m glad people are discussing what to say and what NOT to say, I’m thankful I didn’t know to be angry when others asked questions or shared their opinions. Had I kept quiet, I would have done my son a disservice. Being open allowed him to be fully included and accepted.
He just needs a little help. He struggles with sensory processing issues and transitions. I’ve cried, vented, yelled, and fought. I will never be silenced.
Our journey hasn’t been a smooth one, but it has been made easier by those who weren’t afraid of saying the wrong thing. These days, I could hand out a guide on what’s socially acceptable, but I believe that genuine communication and connection are still essential.
So, let people in. Talk. Share. Educate. Accept. Love.
Summary:
This article reflects a parent’s journey navigating the world of autism and the importance of open communication and community support. It highlights the struggles and victories experienced while raising a son on the autism spectrum, emphasizing the need for understanding and acceptance from others.