“They say he has autism.”
I didn’t accompany my wife to the appointment with the developmental pediatrician. I’d taken a couple sick days not too long before, and I didn’t think it would be prudent to take another. I remember telling her I wasn’t worried. “He’s just a little behind,” I had said. “I was behind. I had to go to therapy and all that. Look, he’s only 2. We’ve got plenty of time for him to catch up.“
I’ll never forgive myself for that.
After my wife shared her news, I stared at the receiver in shock. I’d been so sure.
“Wait,” I stammered. “He uses words! He looks me in the eye! He loves to be loved on! That’s not what autistic kids do.”
“Honey, the doctor’s positive,” she said. “He fits all the criteria. He’s got it.” She sobbed into the phone.
That’s when I learned the first and most important fact about autism: If you’ve met one autistic child, you’ve only met one autistic child.
When your child receives an autism diagnosis, you run headfirst into a steep learning curve. You split your time between educating yourself on the condition and looking for any sign that your child will still be able to lead some kind of “normal life.” You might find yourself poring over those articles about Vitamin B deficiencies, gut bacteria, and fevers that “break the autism” when your kid is sick. You’ll discover overly simple solutions for a beyond-complex situation.
We also came across a number of “common terms” associated with autism. We used these the most:
- Autism Spectrum Disorders: An umbrella term for a wide spectrum of neurodevelopmental disorders that affect a child’s ability to interact, communicate, relate, play, imagine, and learn. Signs and symptoms are seen in early childhood.
- Echolalia: The repetition of words, phrases, intonation, or sounds of the speech of others. Autistic children often display echolalia in the process of learning to talk.
- Hyperresponsiveness: A hypersensitivity or over-reactivity to sensory input.
- Repetitive Behaviors and Restricted Interests: Common in autistic children. They may appear to have odd or unusual behaviors, such as a strong interest in a particular kind of object (e.g., lint, people’s hair), parts of objects, or certain activities.
After almost five years, we’re still adding new expressions to our lexicon; as our son gets older, we’re encountering new terms and challenges.
My son, though, is more than those medical descriptions. I’d like to add some of our own to our list of common terms — unique to him and how he encounters the world.
- “Hiya, Baby!”: His standard greeting, an indication of his excitement to be seeing you.
- “Hugs?”: Self-explanatory. This child is the huggingest kid you’ll ever meet.
- “Tickles?”: Not so much a question as a demand for the immediate provision of sensory input via rigorous bear hugs and tickling to the extremities.
- “Moke!”: A request for sustenance, usually of the dairy persuasion, but also including poultry distributed in nugget form.
- “Woo-hoo!”: It’s on.
He developed these expressions as we scrambled to find the best therapies and tools to help him. They let us know that despite our concerns, he was going on with his happy little life, finding his own ways to let us know what he needed.
Our son has made — and continues to make — great strides in communicating since those early days. But these attempts at communication served as signs of another term, one more important than all those found in online resources or medical journals:
- Hope: An attitude based on an expectation of positive outcomes, related to events and circumstances in one’s life or the world at large.
That particular term — along with its frequent companion, “love” — keep us going. They’ve helped us recognize that the only true indicator of success is our boy’s happiness, and how he feels about himself. It’s not about what we want for him. It’s about what he wants for himself, and what brings him happiness. It’s about living on his own terms — plus hope, love, hugs and moke. Those are the terms that matter.
An overgrown man-child and connoisseur of geek culture, Jeremy Wilson is striving to raise his two sons to be more responsible, self-actualized men than himself. So far, they are not cooperating. You can follow their antics at fatherhoodinthetrenches.com.