So I was a little surprised one morning recently, before summer dance camp, when he stopped me: “Will my friends make fun of me?” I turned to look at him. “No,” I assured him, my voice confident. “They won’t make fun of you.”
My son is at an age when many typically developing 6-year-olds are become intensely interested in their peers, often preferring same-sex friends as they forge bonds over similar interests. For typically developing children, belonging and fitting in is important at my son’s age.
But my son doesn’t really have any friends except for his much-adored 4-year-old brother. He sometimes watches the neighborhood kids with curiosity. But I’ve never really heard or observed any yearning from him about being included or excluded. Until now.
As he’s grown older, I’ve worked to teach him to advocate for himself. He knows he is autistic even though he doesn’t yet quite understand what that means. He knows that he sometimes needs headphones to stop the assault of noises that hit him in a crowded place, including the hallway at school, and he’s learned to ask for them. He knows he sometimes gets the urge to run when he’s overwhelmed and just goes.
When my son is in a new environment, particularly with children, I am upfront that he is autistic and try to explain what that means. He hears noises that you don’t hear, and it’s painful to him. He’s repeating lines from his favorite movie because he doesn’t know how to talk to you. But isn’t that cool that he knows all of the words?
I am speaking for my son until he can speak for himself. I am not autistic, and I am keenly aware that my son’s voice is more important than mine in any discussion about autism. But until he is able to articulate his own experience, I am trying my best to help him navigate.
Keisha Matthews-Berry, director of the Connections Therapy Center in Lanham, Md., said families approach this in different ways. “Some families are fearful of what others may think autism means,” she said. “They already have some negative thoughts or expectations about their child. If they’ve been in an environment where their child has been rejected, they are less likely to want to share that openly. Other families may have more inclusive experiences. That also impacts how comfortable they are with communication.”
The Centers for Disease Control and Prevention estimates that 1 in 59 children has autism, yet I’m still baffled about how much time I spend explaining autism to other people, especially to educators and medical professionals.
The hard part for me as a mother of a child on the spectrum, the hard part for any parent, is watching our kids learn to navigate a world that can be hostile to differences. Novelist Katie Rose Pryal wrote honestly and beautifully last month about her disabled 6-year-old getting kicked off a swim team. “The question is simple,” she writes. “Is there room for disabled kids at a piano school? On a swim team? In most classrooms? The answer, right now, seems to be no.”
Kindergarten last year was difficult for my son for just this reason. In an inclusive classroom at our neighborhood school, he learned the word “stupid” from a classmate. I gasped when I heard my son repeat the word at home. I gasped because I knew, even before my son explained, that someone had called him that. The same boy learned that my son would melt down as he tried to navigate a social order he didn’t understand. “Will you be my friend?” my son would ask. “No,” the boy would reply, waiting for my son to become upset. “Will you play with me?” “No,” the boy would answer. “Maybe tomorrow?” my son would ask expectantly. At home, my son would create an imaginary world in which this boy always wanted to play. I’d hear him in the back yard scripting the conversation the way he wanted it to go, and it broke my heart.
Much of kindergarten didn’t make sense to him. In his black-and-white world, when you say hello to someone, they say hello back to you. If you hurt someone, you say you are sorry. My son had to be taught social skills through intensive therapy. For years, his therapists and I kept telling him to use his words. Now when he growls, “I don’t want to talk to you,” to a teacher, he doesn’t understand why he shouldn’t use his words.
At our neighborhood block party this summer, he inserted himself into a game of dodgeball. When he got hit by the ball, which is the point of the game, he wanted an apology.
This weekend we went to a 4-year-old’s birthday party. When the birthday boy pretended to be a lion and growled at him, my son got angry and pushed him. “He’s being mean to me,” my son cried. He wasn’t, but my son couldn’t see it another way.
So this sudden social awareness about dance camp was new. When we got to camp that first morning, he grabbed onto me, shy. Everyone was looking at him, this curly-haired boy wearing purple shoes and noise-canceling headphones and clutching his DJ Suki doll. He turned to me and asked if he could get another color of shoes. “But you love purple,” I told him. No, he insisted. He wanted blue now.
He was assigned an African American male aide. I smiled at the sight of them in the midst of the blond pigtails, the blue eyes. It was reassuring to see that he wasn’t alone. The aide later told me that my son didn’t really need him that much. He mostly helped when he could tell my son didn’t know how to ask someone to be his dance partner, or if he needed a break.
At dance camp, for the first time, my son seemed aware of who he was and who society told him he was supposed to be. It made me sad to see him self-conscious about something that made him happy but also a little relieved because one of the challenges of raising an autistic child is to help him integrate into the world when he is oblivious to social order. This difficulty in understanding authority is common for many autistic children. Someday, my son, who was born in Morocco, will be an African man in America, and I’m scared to death of what that means if he doesn’t learn about rules.
Camille Proctor, the founder and director of Detroit-based Color of Autism Foundation, understands my fear. “If they don’t understand how to yield, they will get shot,” said Proctor, the mother of a 12-year-old African American boy with autism.
Like me, she has found that children are more accepting of her son when she explains that he navigates the world differently than they do. “When you talk to children, when you meet them where they are, they’re fine with it,” she said. “If you don’t say anything and you expect to engage and embrace, you may get disappointed. He had girls and boys who played with him and went out of their way to do things for him.”
I didn’t take the time to explain to the girls at dance camp that my son was autistic. He was only there for a week. If the girls had questions, I didn’t hear them.
One morning, the dance instructor set out hula hoops, and the girls started grabbing them. Go on, I urged my son, who was hanging back, watching. I’m in awe of his ability to spin the hoop for long periods of time, slowing it down to his ankles and then bringing it back up to his waist. As soon as he started, the girls looked over at him. A few walked over to watch and to admire the little boy whose waist and hips moved to a rhythm they couldn’t hear.
Jackie Spinner was a staff writer for The Washington Post for 14 years. She is now an associate professor of journalism at Columbia College Chicago and executive producer of “Don’t Forget Me,” a documentary on autism in Morocco. The film is scheduled for release this fall.