When my son first started kindergarten with an aide, I heard, “He looks so normal,” a zillion times, and he does look normal, whatever that is. He looks typically developing. Like nothing is different.
I’d nod my head and agree, “I know, right?!?” just as baffled as they were. See, my son’s diagnoses are invisible. Autism. Sensory processing disorder. Anxiety. You can’t SEE them, which is what I think people mean when they say, “He looks so normal” – one of many phrases that are frowned upon in the autism community.
“Why does he have an aide?” a mom inquired. “Because he’s a flight risk and a Houdini, the kid could escape from Alcatraz,” I answered, oddly proud of my child’s escape artist abilities. He has He is He is . He requires less support (but he needs A LOT of support, so how can that be correct?).
What am I supposed to say again? Or NOT say?
“He sure talks a lot. And he keeps repeating movie lines!” Yes, he’s verbal. That’s echolalia.
“Are you sure he’s autistic?” Yes, he has an autism diagnosis. He has autism. He’s on the autism spectrum. I’m a mom of a boy who has autism.
I didn’t know what I was supposed to say or what they were supposed to say. I didn’t know the politically correct responses. The rules. We just talked. We bonded, as mothers and as friends, thrown together because our kids went to school together. I didn’t think of my son’s autism as a label; it was just a part of him, and I talked about it. I shared what I learned, as I learned. I talked. A lot.
These moms watched without judgment as my son had a meltdown because he didn’t want to wear their matching shirts on a field trip. One mom confided in me that she has extreme anxiety too when my son had a panic attack before the Halloween parade. We received hugs when my son participated in the jog-athon fundraiser without support for the first time in fourth grade.
When I couldn’t be at the Elementary School, I’d receive email updates: “Your son did amazing at the school party today.” They’d send pictures. Yes, he was off to the side, or maybe he was clinging to his aide, but he was there and he was having fun and they were watching over him.
“Your son is hanging out with a bully,” I was warned by another guardian angel.
“I saw your son playing with two girls at lunchtime!” they celebrated when he’d make progress.
“I saw your son pacing by himself on the field during an assembly,” they’d report, notifying me when the school was in noncompliance.
These moms who did not know about autism, who were brave enough to ask questions and have a conversation, embraced my son. They became my eyes and ears when I was not there. They invited him to their children’s birthday parties and they included him in all of the school’s events.
Or sometimes there were moms who didn’t ask questions. They’d stare or whisper to each other, or look away and act busy. I’d approach these moms and start a conversation about autism. Most were receptive. Most people are open and kind and want to be included. They’re uncomfortable and afraid to ask the questions in fear they’ll be ridiculed for not knowing. Or they don’t want to be nosy. But they want to help. They want to know.
Just a few weeks ago, I received a text, “Did you know your son is here?” with a photo. He had taken our local shuttle to a grocery store after school, because these days my teenager with autism has more independence. He was supposed to be at the park two blocks from our house. This mom was still looking out for my son, and our kids don’t even go to school together anymore. I’m so, so grateful.
What if we hadn’t talked all those years ago when my son refused to use the boy’s bathroom until they painted fish on the walls, since he had heard they had fish in the girl’s restroom?
“Why is he rocking? Does he always pace like that? Is he OK?” He’s great. He’s stimming. Do you know a lot of people stim by chewing on their pencils, or bouncing their crossed legs while seated, repetitively rubbing their skirt hem? Most people stim, but my son stims a lot and noticeably. It’s self-soothing. And it’s OK to talk about it.
I didn’t have to worry about my son being bullied.
Read that again. It’s huge. In my community, where I so openly talked about autism, my son was watched and cared for and included. Most of the kids were educated about autism as a result, but they just accepted him as he was. Now that he’s in junior high, I miss those days and that umbrella of protection. Now there are bullies. And jabs. And jokes that aren’t funny at his expense. I miss the mom shield.
“Have you tried the gf/cf diet?” Yes, we try to stick to it, but it’s so hard and expensive and my son loves pizza. “Did it cure your child?” Oh please don’t say that word or you may be flogged. . Yes, we tried the diet and it has helped, in our case, to relieve some intestinal discomfort, but he still has autism.
While I’m glad that everyone is talking about what to say and what NOT to say, personally, I’m glad I didn’t know to be angry when people asked me questions, stated their opinions, or shared what they had read online. Had I not been so incredibly vocal and open, I would have done my son a terrible disservice. And I’m so glad I talked to everyone, or I would have robbed him of the opportunity to be fully included and accepted.
He just needs help. He’s having sensory processing issues. He’s having a challenging time with transitions. I’ve cried. I’ve vented. I’ve yelled. I’ve fought. And I will never be silenced.
Our path has been far from the yellow brick road, but it has been made smoother by those that didn’t know. Those that didn’t have the correct vernacular or the guidebook on autism or a list of what they were not allowed to say. These days I could just hand them a list of what is socially acceptable and make it a whole lot easier, but I think the communication and human connection is still important.
Let people in. Talk. Share. Educate. Accept. Love.