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It comes up everywhere. First day icebreakers, team-building activities, even casual conversation: “What’s your family like?”
My response is automatic: “I have two older brothers, Hunter and Cameron. Hunter is in college and Cameron is autistic.”
There is always a pause as everyone absorbs the information. Some might nod sympathetically, others seem surprised, but eventually, no matter who asks, no matter where or when, the next question all boils down to one phrase: “What’s it like?”
I hesitate. How do you explain what has always been your “normal?” What is my normal?
Normal is maturing from an early age.
As a child, I was Cameron’s ambassador, his interpreter. When my parents weren’t around to help him calm down, the responsibility fell to me. At the dentist, I made sure they let Cameron hold his favorite toy, a stuffed Mickey Mouse, to keep him compliant as they worked. At programs for special needs kids and their siblings, if he had to be removed from the room because he became angry, I stepped in to advise the adult volunteers and make sure they weren’t saying anything that could trigger a meltdown.
Normal is forgetting he’s older than me.
Walking into Cameron’s room, you’d never guess it belongs to a 20 year-old. A layer of stuffed animals and McDonald’s toys hide the carpet from view. You might find him crouched in the corner of the room, watching scenes from old Disney movies on his iPad, loudly mimicking the dialogue and sound effects, or perhaps in the game room, hunched over a pile of papers as he carefully duplicates the title font of Scooby Doo. His behavior is reminiscent of a young child’s; he often communicates by using phrases picked up from cartoons and movies. (Lately, instead of answering “yes” to a question, he responds with “as you wish,” ala The Princess Bride.) Conversations are often scripted, each question requiring a specific answer and eliciting a specific response. He can’t answer a “why” question unless you give him options, like a multiple choice test.
Normal is making unconscious sacrifices.
Very few of my friends have spent more than an hour in my house. The only guests we entertain are our relatives. There are no big birthday parties at my house, no sleepovers, no hanging out with friends and playing video games while ignoring homework. Our fridge has no soda; Cameron is allergic to food coloring and artificial flavors.
But it’s also being surrounded by art and creativity.
The first things you notice in the game room are the walls. Every inch is adorned with perfectly copied calligraphy of Disney movie titles and scribbled bits of dialogue from movies or TV shows. Animals crafted from pompoms and pipe cleaners coat the floor. Whether Cameron wields a marker or a hot glue gun, every movement is precise and intentional, a step in his meticulous creative process.
Most of all, normal is empathy.
Growing up next to someone with autism makes me keenly aware to those around me. It only takes a few weeks, perhaps a few days, to pinpoint anyone with a touch of autism. I’m drawn to them, feeling obligated to be their friend and defend them from casual remarks or looks, just as I do for Cameron. My brother has taught me how to give a voice to the voiceless, to be an advocate for those who can’t stand up for themselves. And while it can be hard to deal with those who do not understand, I know I would not be the same without Cameron.
So, what’s it like?