Heartache and Joy: Communication Challenges with Autism
Life with a speech-delayed toddler is filled with heartache and joy. Along with the usual toddler demands comes the added difficulty of not being able to easily communicate. In my child’s case, her severe speech delay is due to autism spectrum disorder and motor planning issues. Our days are filled with struggle. My failure to understand her can send her into a rage or meltdown, further fueled by the autism. Yet we do find joys amongst the everyday struggles of communication challenges with autism.
Photo by Quinn Dombrowski
A simple question is often met with silence, random words that don’t make sense, or an unintelligible response because her brain and mouth don’t connect. Sometimes, we get lucky and she says words I can understand, which makes us both smile. Yes and no questions abound just so we can get through the day. After many tries to get an answer, “What do you want for breakfast” becomes, “Do you want oatmeal?” Wait for an intelligible response. “A banana?” Wait again. This repeats until she finally agrees to something. If it’s a food that involves choices, such as what jelly to put on the peanut butter sandwich, the yes/no questions continue.
Frustration with this back-and-forth often hits one of us because it takes so long and doesn’t always produce the desired result. I’ll fail to guess what she wants and pick something just so we can move on. She may eat it, refuse it or have a meltdown over not getting what she wants. This exchange repeats for every snack, meal, possible activity, what to wear—anything that involves a choice.
It’s heart breaking that she tries so hard to talk, but all that comes out is the wrong words or grunts because her mouth won’t form the words that are in her head. She relays all her stories with such enthusiasm, despite the random words and grunts. Little hands and face animatedly tell a story no one else can understand. I’m careful to show appropriate interest and excitement so she doesn’t get discouraged and stop trying to speak.
Her sweet face crumbles when I admit, “I’m sorry, Mommy doesn’t understand.” Sometimes, that sets her stimming, saying the same few random words over and over. This comes from the autism. She’s not able to describe her feelings, and I just know something is wrong because of the stimming. When I do understand her, I’m often the only one who does.
She cries, wanting or needing things so badly, but not able to speak clearly enough to tell me. Eventually, I’ll figure out what’s wrong and make it right. As right as I can, because she’s terribly upset and hurting because she couldn’t just say what she needs. I hurt from wanting to simply be able to communicate with her like other parents do with their child. I’m left to wonder what is going on in her head and heart because she can’t tell me what I so desperately want to know. I can’t help but think she’s wondering, “why can’t I get the words to come out? Why don’t people understand me? Will they ever understand me?”
Surprisingly, this daily struggle leads to joy. Simple things a typical toddler would say—things that are usually taken for granted—take on special meaning. The joy of the first time she said her brother’s and the cats’ names far overshadowed the fact that she said it later than usual. It filled me with pure happiness to hear. Even the first time she strung together three words, after a year of early intervention services, was a cause for celebration—never mind that I was the only one who could understand her. To me it was enough that she’d said it.
We’ve learned to not overlook the small things. These small things are what keep us going and keep us thankful for what others may overlook.