I knew my child was going to be different before he was even born. Early ultrasounds showed that his lip and palate failed to correctly fuse together in utero. He was born with a complete bilateral cleft lip and palate.
I expected people to say things about his lip and nose. Often, when I would take him out in public, people would look at him, do a double take, and ask, "What's wrong with his nose?" or "Why does his lip look like that?"
Blunt, rude, and nosy? Perhaps, but it didn't really bother me. It was what it was, and I knew surgery would correct it.
Early on, however, I noticed my son displaying odd behaviors. He would get really excited and run around the house over and over. He would repeat television commercials verbatim. He would "lean in" instead of hug, and "thank you" or "okay" would be his reply to "I love you." And there were those little orange spoons he insisted on carrying everywhere.
But he was highly verbal and intelligent. He played with toys and he talked to people. Besides, he was receiving speech therapy to help with his facial difference and physical therapy to strengthen some muscle weakness. I knew he would be just fine.
Still, it was difficult to take him places. He wandered off, didn't listen, and interrupted people's conversations. He didn't behave like his brothers.
One summer, I signed him and his younger brother up for golf lessons. It was a distraction for them and me, as their older brother was battling terminal brain cancer. At one lesson, I sat on a blanket watching and trying not to jump up every time my son interrupted the golf pros or wandered away from the group.
All at once, a female golf pro stormed up to me and said, "What is wrong with your son? Does he have autism or something?"
"Umm, no," I stammered, completely shocked by her bluntness. "He just... he just has trouble staying in one place."
She huffed at me and stomped off as I sat fighting back tears feeling the eyes of all the other mothers on me.
At home, I called my husband crying and asking that he call the club and complain about the golf pro.
While her question was rude and unkind, I had to admit to myself that the possibility of autism had crossed my mind more than once. I had asked his special education preschool teacher if she thought he might be autistic. Her response? "Oh no, we have kids way worse than him."
I asked his kindergarten teacher, who was a 20-year veteran of early childhood education. "Oh no, he's too smart," she assured me, and I left it at that, because after all, I had a dying child to care for at the time. I didn't want to deal with autism, too.
After his brother died, we spent time managing our grief as a family. The possibility of autism was swept under the rug. But it didn't stop random people from commenting, and it was always phrased as, "What's wrong with him? Does he have autism?"
He was almost 10 years old when he was diagnosed. The older he got, the more I realized that despite his intelligence and his desire to be social, there was something different about the way he was going about it. I took him to a developmental pediatrician who finally diagnosed him with high-functioning autism.
Now he is 12. He is still the smartest person I know. He hugs and cuddles and tells us he loves us. He cares deeply about people and animals and feel injustices sharply, as he sees the world as strictly black and white.
He is being coached on the proper ways to engage in conversations, and he is learning executive functioning skills to help him make the most of his education. He is one of the most special people I know, and parents and teachers who work with him are constantly telling me how much he delights them.
I frequently think back to what that golf pro said. The more I learn about autism and meet people with autism, the more I am angered that someone would actually think having autism means that there is something wrong with a person.
Having autism means that a person has a different way of looking at and experiencing the world. Having autism makes a person unique and interesting. It gives them special challenges and remarkable gifts. For me, it makes my world a more interesting one in which to live.
What that woman said was insensitive, but in a way I'm grateful to her. She made me realize there was nothing ever wrong with my child, just something special.