When my son began kindergarten with a support aide, I often heard the phrase, “He looks so typical.” And yes, he does look like any other child. He appears to be developing normally, at least on the surface. I would nod in agreement, equally perplexed. My son’s challenges—autism, sensory processing issues, and anxiety—are invisible. They aren’t seen, which is likely what people mean when they remark on his normal appearance—one of many comments that can be problematic in the autism community.
“Why does he need an aide?” one mother asked. “Because he’s a flight risk and quite the escape artist—he could escape from any situation,” I replied, oddly proud of his cleverness. He is capable, yes, but also needs significant support (though it may not always be evident).
What should I say? Or what should I avoid saying?
“He talks a lot and repeats movie lines!” “Yes, that’s called echolalia,” I would respond. “Are you certain he’s autistic?” Of course, he has an autism diagnosis. I’m a mother of a boy on the autism spectrum.
I was uncertain about the right things to say or how to navigate these conversations. I didn’t know the politically correct responses or the unspoken rules. So, we simply talked, forming connections as mothers, united by our children attending the same school. For me, my son’s autism was not a label; it was part of who he is, and I was open about it. I shared my learnings and experiences freely.
These mothers observed without judgment when my son had a meltdown because he refused to wear matching shirts on a field trip. One even confided in me about her own anxiety when my son experienced a panic attack during the Halloween parade. We celebrated together when he participated in the jog-a-thon fundraiser independently for the first time in fourth grade.
When I couldn’t be at school, I received emails like, “Your son did wonderfully at the party today.” They would send photos, and yes, sometimes he was off to the side or holding onto his aide, but he was there, having fun, while they looked out for him. “Your son was with a bully,” one caring parent informed me. “I saw him playing with two girls at lunch!” they cheered when he made strides. They reported when he was pacing alone during an assembly, ensuring I knew the school was meeting his needs.
These mothers, though initially unfamiliar with autism, bravely asked questions and engaged in conversations. They embraced my son and became my eyes and ears when I couldn’t be present. They invited him to birthday parties and included him in school events.
However, some mothers chose to remain silent, whispering or acting busy instead of engaging. I would often approach them to discuss autism, and most responded positively. Generally, people are kind and eager to connect; they might just feel uncomfortable or hesitant to ask for fear of seeming intrusive.
Just recently, I received a text saying, “Did you know your son is here?” along with a picture. He had taken the local shuttle to a grocery store after school instead of going to the park nearby. My son, now a teenager with autism, is gaining independence, and this mom still looks out for him. I’m incredibly thankful.
What if I hadn’t engaged in conversations all those years ago when my son refused to use the boys’ restroom until they painted fish on the walls, thinking they had fish in the girls’ restroom? “Why is he rocking? Does he always pace like that? Is he okay?” He’s great. He’s stimming. Did you know many people stim by chewing on pencils or bouncing their crossed legs? Most folks do some form of stimming, but my son’s is more pronounced; it’s self-soothing and perfectly normal.
I never had to worry about him being bullied. That’s a big deal. In my community, where I openly discussed autism, my son was cared for, included, and accepted. Most kids learned about autism, fostering an environment of understanding. But now that he’s in junior high, I miss that supportive shield. Bullying, jabs, and unfunny jokes have become a reality.
“Have you tried the gf/cf diet?” “Yes, but it’s challenging and costly, and my son loves pizza.” “Did it cure your child?” Oh, please don’t say that word! Yes, we tried the diet, which helped alleviate some discomfort, but my son still has autism.
While I appreciate the conversations about what to say and what not to say, I’m grateful I didn’t let anger overshadow my interactions. Had I not been so vocal, I could have deprived my son of the opportunity for inclusion and acceptance. He just needs support. He’s navigating sensory challenges and transitions. 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 made easier by those who didn’t have the right terminology or a handbook on autism. In today’s world, I could hand out a list of acceptable phrases, but I believe that genuine communication and a human connection are irreplaceable. Let people in. Talk. Share. Educate. Accept. Love.
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In summary, open dialogue and genuine connection can make a world of difference for families navigating autism. By fostering understanding and awareness, we can create a more inclusive environment for all children.
Keyphrase: autism acceptance and support
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