April is here again, and with that comes Autism Awareness Month. But what does that mean? I’ve been an autism mom for over ten years. My son was officially diagnosed shortly after his third birthday back in 2013, although we had been receiving developmental therapy since he was 15 months old. I also have two typically developing children.
Most people know autism is a spectrum disorder, and with that, the strengths and challenges vary from person to person. For some, it’s difficult to speak a single word, others can have fluid conversations. Sometimes a strict routine is a must, others can go with the flow. Some may be a sensory seeker or sensory avoider for certain sights, sounds, smells, or tastes. Every person has unique strengths and needs.
Sometimes frustration that stems from these challenges can come out through extreme emotional outbursts, often referred to as a meltdown. It is an uncontrollable expression of frustration from being overstimulated and/or being unable to communicate needs or feelings.
Like most parents, my hope when we go out in public as a family is to blend in as much as possible, to not cause too much of a scene. And we were mostly able to do that for a long time. Babies cry, toddlers throw tantrums. People understand. Moms give sympathetic, encouraging nods. “Been there”, they seem to say.
But then kids grow up and grow out of that for the most part. Unless you have a child with special needs.
I remember becoming very aware when we hit the stage where we couldn’t pass off a difficult moment or meltdown as a “toddler tantrum”. The looks from strangers changed from sympathetic to confusion, or worse, judgment. I try to block it out and only focus on supporting my son through a difficult moment. But the tears and knot in my stomach are always waiting for me once we get through it.
But every once in a while, an encounter happens that restores my faith in humanity. One happened on a sweltering, fall Indiana day. Our family was enjoying a day at the zoo. We had been walking around for a couple of hours and my oldest wanted to ride the zoo train. Desperate for some shade and a few minutes of downtime, we agreed and headed toward the loading platform.
My son started to show signs that he was anxious about riding the train. We did our best to prepare him for what the train would be like. His anxiety is tricky to navigate because more often than not, once he tries something he really enjoys it. We push him to try new experiences, without pushing too far. My husband and I could have split up and one of us stayed behind with him. But then we wouldn’t know if he could do it. And we are desperate to have fun experiences together as a WHOLE family.
The train was proving to be one of those tough experiences. He begrudgingly climbed on the train and took a seat. The train started to move and with it came tears, and dare I say, wailing. I could feel the eyes of every person on the train turning to look at us. I pulled out every trick I had in my mom bag of tricks. Suckers, fidgets, snacks, toys, singing songs-you name it, I did it. Nothing was working. We had no choice but to wait out the rest of the train ride. It was an excruciating ten-ish minutes.
As we disembarked the train, a mom with two small kids started walking directly towards me. I felt my heart sink while simultaneously puffing up my chest, ready to lash out and defend my child if she had a nasty comment. But instead, she walked up with kind eyes and a gentle touch to my arm.
“You’re doing a good job”, she said. “I’ve been where you are, and I see what you’re doing for your son. Keep going, don’t stop”. I swallowed the lump in my throat, squeaked out a tiny “thank you”, and then walked away and burst into tears.
That’s it. That’s what Autism Awareness Month is all about. This mom’s gesture of support and kindness meant everything to me. Because of her, we had the courage to try to ride the train again the next year. He now loves it.
I challenge you to evolve your thinking from Autism Awareness to Autism Acceptance. There is a difference. Knowing autism exists and accepting the gifts and challenges that come with it are two different things. Awareness is great, but acceptance is where we come together. We don’t have to pretend that struggles are invisible. Meet people of all abilities where they are at. Celebrate victories. Support them in tough moments. Be kind.
I pray I can always be a light to another parent who is having a tough moment, autism-related or not. And I’m hopeful that we can model this all year round, not just in April for Autism Acceptance Month.