There’s a lot of awareness around nonverbal autism — it’s a visibly obvious disability. Parents of nonverbal children often talk about longing to find their child’s voice. I totally get that. I can’t imagine what it’s like to have a child who can’t tell you what they need or want. A child who can’t say, “I love you, Mama.” It’s pains my heart just imagining it, and yet, living it is unimaginable.
It struck me yesterday that I have more in common with parents of nonverbal children than I had recognized. I’m also searching for my child’s voice. Only in a different way — figuratively, not literally. My son, too, has autism. He’s what people call “high-functioning,” yet, he’s barely meeting the definition of functioning for a teen in his current space in the world. He’s certainly not functioning at a “high level.”
Having “high-functioning” autism is to be completely and entirely misunderstood.He looks like any 15-year-old boy. He can participate in a mature, clear conversation with an adult. He’s wicked smart. If you spend just a few minutes with him, you would likely walk away without a second thought that there’s more to his story, more to his personal truth.
But, if you live a lifetime with him — his struggles, his pain, his primitive fight to be accepted and understood for who he is — you realize there’s nothing about autism that equates with a “high level” of functioning.
Just being at school is torturous. It’s so hard that there are many days he refuses to go. He doesn’t understand the kids around him, and they don’t really understand him. Tight, crowded, chaotic, loud hallways feel like a personal assault — like he’s always under a never-ending siege. Then there’s the schoolwork. Schoolwork that is easy for most of his peers is a brutal tug-of-war between teacher expectations and capability, or how his brain actually functions.
Educators see a kid who struggles with the basics of high school, despite being wicked smart. Club leaders see a quitter. Peers see a weird kid that is easily triggered by the slightest jab — a kid they can manipulate into putting on an embarrassing show.
I see a smart, innovative, creative, kind, loyal young man who just can’t find his voice… yet. It’s being muted by the symptoms of ADHD, autism, and learning disabilities, and the expectations of the neurotypical world.
Unlike parents of nonverbal kids, I get to keep the flame of hope flickering for my son’s voice. I get to be optimistic that he’ll find his voice and be able to live his truth comfortably… someday. That others in his life will understand him, and he will better understand the world around him, and contribute a great deal to it.
Until then, I lean on hope. I keep fighting to help my son finally find his voice, and have his voice accepted at its word. I know that he’ll have success and happiness then.