When my son first entered kindergarten with the help of an aide, I was met with the phrase “He looks so normal” countless times. He does present as typically developing—whatever that means—but beneath the surface, his challenges are anything but visible. Autism, sensory processing disorder, and anxiety are part of his reality, yet they remain unseen. I often nodded in agreement, “I know, right?!?” feeling just as confused as those around me. The phrase “He looks so normal” is one of many that many in the autism community find problematic.
One mother asked, “Why does he need an aide?” I responded, “Because he’s a flight risk and a little Houdini; he could escape from anywhere!” I felt a strange sense of pride in his cleverness. Yes, he requires a lot of support, yet he often seems to need less—how does that even work?
What should I say or not say?
“He talks a lot and repeats lines from movies!” Yes, that’s echolalia—an important part of how he communicates.
“Are you sure he’s autistic?” Yes, he has an autism diagnosis. I’m a mom of a child on the autism spectrum.
At times, I felt lost about the right responses or etiquette. The conversations flowed naturally, though, as we connected as mothers with kids in the same school. My son’s autism wasn’t a label to me; it was simply part of who he is, and I shared our experiences openly.
Those moms stood by me without judgment, even when my son had a meltdown over not wanting to wear matching shirts on a field trip. One mom confided in me about her own struggles with anxiety when my son experienced a panic attack before the Halloween parade. We cheered as he participated in his first jog-a-thon without support in fourth grade.
When I couldn’t be at the school, I would receive updates like, “Your son did wonderfully at the party today.” They sent pictures showing him enjoying himself, even if he was slightly isolated or clinging to his aide. “Your son is with a bully,” a concerned friend warned. “I saw him playing with two girls at lunch!” they celebrated when he made strides. “He was pacing alone during assembly,” they informed me, ensuring I knew when the school was not meeting his needs.
These mothers, who initially had little knowledge about autism, were brave enough to ask questions and engage in conversations. They became my eyes and ears when I couldn’t be there, inviting my son to birthday parties and including him in all school activities.
Conversely, I encountered moms who didn’t ask questions. They would stare, whisper, or look away. I often initiated conversations about autism, and most were open and kind. Many were simply uncomfortable and didn’t know how to ask, fearing they might be judged for their ignorance.
Just weeks ago, I received a text with a photo, “Did you know your son is here?” My teenager had taken a local shuttle to the grocery store after school instead of heading to the park two blocks away. This mom was still watching out for him, even though our kids no longer attend the same school. I am forever grateful for that.
What if we hadn’t opened up?
What if we hadn’t opened up years ago when my son refused to use the boys’ bathroom until they painted fish on the walls, believing they were only in the girls’ restroom? “Why is he rocking? Does he always pace like that?” He’s just fine—he’s stimming. Did you know that many people stim by chewing on pencils or bouncing their legs? Most people have their own ways of self-soothing, and it’s perfectly okay to discuss it.
Throughout this journey, I never had to worry about bullying. In my community, where I openly talked about autism, my son was cared for and accepted. Most children were educated about autism, allowing them to embrace him just as he is. Now that he’s in junior high, I long for those earlier days of protection. Bullying, jabs, and unfunny jokes have become part of his reality. I miss that network of supportive moms.
“Have you tried the gf/cf diet?” Yes, we try to stick to it, but it’s expensive, and my son loves pizza. “Did it cure your child?” Please, let’s avoid that word. Yes, the diet has helped alleviate some intestinal discomfort, but he still has autism.
While it’s great that conversations around autism have evolved, I’m thankful I didn’t let anger cloud my interactions when people asked questions or expressed opinions. If I hadn’t been so open, I would have done a disservice to my son. I cherish the connections we made; they allowed him to be included and accepted.
He just needs help navigating sensory processing issues and challenges with transitions. I’ve cried, vented, yelled, and fought for him. I will never be silenced.
Our journey hasn’t followed a smooth path, but it has been made easier by those who didn’t have the right vocabulary or a guidebook on autism. These days, I could provide a list of “acceptable phrases,” but I believe that genuine communication and human connection remain vital.
Let people in. Talk. Share. Educate. Accept. Love.
This article was originally published on August 5, 2015.
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Summary:
A mother shares her experiences with her son’s autism journey, emphasizing the importance of open communication and community support. Through candid interactions with other parents, she highlights the challenges and triumphs of raising a child on the autism spectrum. The narrative captures the essence of acceptance, understanding, and the need for dialogue about autism in society.