When my son first began kindergarten with the assistance of a dedicated aide, I was met with the phrase, “He looks so normal,” countless times. And yes, he does appear to be typical—whatever that means. He looks like any other child, without any visible signs of difference. I would nod in agreement, “I know, right?!?” equally perplexed by the assumptions. You see, my son’s challenges are not visible to the eye. He lives with autism, sensory processing disorder, and anxiety. These conditions don’t have a physical marker; people often use the term “normal” to describe what they can see.
“Why does he need an aide?” a fellow mom once asked. “Because he’s quite the escape artist; he could likely break free from Alcatraz!” I replied, feeling a strange sense of pride in my son’s adventurous spirit. He may require less support now, but let’s be real—he still needs a lot of help.
What should I have said? Or not said?
“He sure talks a lot and repeats movie lines!” Yes, he’s verbal. That’s called echolalia.
“Are you sure he’s autistic?” Yes, he has a diagnosis of autism. I’m simply a mom of a boy on the autism spectrum.
In those early days, I wasn’t entirely sure of the correct responses or the unspoken rules of engagement. We just talked. We connected as moms and friends, united by our children’s school experience. I never viewed my son’s autism as a label; it was merely a facet of who he is, and I was open about it. I shared my insights as I gained them, and I talked—often.
These moms stood by without judgment during my son’s meltdowns, like the one that occurred when he refused to wear matching shirts on a field trip. One mom even confided in me about her struggles with anxiety when my son had a panic attack before a Halloween event. Their support was palpable when he participated in the jog-a-thon fundraiser independently for the first time in fourth grade.
When I couldn’t be at the elementary school, I received emails updating me: “Your son did wonderfully at the school party today.” They’d send pictures—even if he was sitting off to the side, or clinging to his aide. He was there, having fun, while they kept a watchful eye on him.
“Your son is hanging out with a bully,” one mom warned me, while another celebrated, “I saw him playing with two girls at lunchtime!” They kept me informed, even notifying me if the school was not meeting his needs.
These mothers, who initially knew little about autism, bravely asked questions and engaged in conversation, embracing my son wholeheartedly. They became my allies, keeping an eye on him when I couldn’t be there. Invitations to birthday parties and school events flowed in.
Yet, there were also moms who chose silence. They would glance or whisper among themselves, avoiding eye contact. I often initiated conversations about autism with them. Most were receptive; many people genuinely want to help, but their discomfort can make them hesitant to ask questions.
Just a few weeks ago, I received a text that read, “Did you know your son is here?” accompanied by a photo. He had taken the local shuttle to a grocery store after school, when he was actually supposed to be at the park just two blocks from our home. This mom, despite our kids no longer attending the same school, was still looking out for him. I felt so grateful.
Understanding Autism
What if we hadn’t had those conversations years ago when my son refused to use the boys’ restroom until fish were painted on the walls, since he thought they had fish in the girls’ restroom?
“Why does he rock? Does he always pace like that? Is he okay?” Oh, he’s doing great. He’s just stimming. Did you know that many people stim by chewing on their pencils or bouncing their legs while sitting? It’s a common behavior for self-soothing, and it’s perfectly okay to discuss.
I didn’t have to worry about my son being bullied.
Read that again. It’s a significant point. In my community, where I spoke openly about autism, my son was watched over and embraced. Most of the children learned about autism and accepted him for who he was. However, now that he’s in junior high, I miss that protective environment. Bullying has become a reality, and the jokes at his expense are hurtful. I miss that safety net of supportive moms.
“Have you considered the gf/cf diet?” Yes, we attempt to stick to it, but it’s challenging and pricey—and my son loves pizza. “Did it cure your child?” Oh, please don’t use that word; it’s a sensitive topic. Yes, the diet has helped alleviate some discomfort, but it hasn’t changed the fact that he has autism.
While I appreciate the discussions around what to say and what not to say, I’m thankful I didn’t let anger cloud my response when people asked questions or shared their thoughts. Had I kept quiet, I would have done my son a disservice. I’m grateful I engaged with others; otherwise, he might not have had the chance to be included or accepted.
He just needs a little help. He struggles with sensory processing issues and finds transitions challenging. I’ve cried, vented, yelled, and fought for him, and I refuse to be silenced.
Our journey has been anything but smooth, but it has been enriched by those who didn’t have the correct terminology or a guidebook on autism. Nowadays, I could offer a list of socially acceptable phrases to make life easier, but I believe that genuine communication and human connection are essential.
Let people in. Talk. Share. Educate. Accept. Love.
This article was originally published on August 5, 2015.
If you’re interested in exploring more about parenting and autism, check out this post on Cervical Insemination. For those considering home insemination, Make a Mom offers excellent options for at-home syringe kits. Additionally, Healthline provides valuable insights on pregnancy and home insemination.
In summary, embracing open dialogues about autism can foster understanding and acceptance, leading to a more supportive environment for children and families navigating these challenges.
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