Thinking About Labels and People and Cheese

For the last several days, a question has been reverberating in my mind.

I first heard it when I spoke to a group of teenage volunteers who spend time with peers who have special needs through a program called Friendship Circle. I had been invited to talk about raising a child with autism, to provide a window into the kinds of children these teens might encounter.

After a number of excellent and insightful questions, one girl in the front raised her hand. “If you meet someone you don’t know,” she asked, “how can you tell if the person has autism?”

I began to answer with examples of the symptoms people with autism might display: repetitive behaviors, lack of eye contact, narrowly focused interests. But then I stopped myself.

“The truth is,” I said, “you can’t tell. It’s impossible to tell.” I explained that autism is a spectrum disorder. As a psychologist once explained to me, the word autism doesn’t describe a person, but rather a set of symptoms. If you have a certain number of those symptoms, a doctor might diagnose you with autism. No two people manifest the disorder in exactly the same way. Ezra goes to a school where most of the students have some form of autism or a related disorder. But when I look around the school, no two kids are alike, no two children are affected in the same way.

When I give talks about Following Ezra, people frequently respond with their own diagnoses. “It sounds like he has Asperger’s,” one woman insisted. “Does he have Asperger’s or high-functioning autism?”

People have a great need for labels. Labels helps us to make sense of the world. And labels can be helpful shorthand. But, of course, labels have their limits. If I asked you to go to the market and buy something called cheese, you might come back with any of hundreds of varieties, and any one of them would fit the definition of cheese. When I sent you, I might have been thinking of Brie, but what you brought me might be Cheddar. Still cheese.

I wrote Following Ezra not to say “this is what autism is,” but rather to describe one child, one relationship, one journey of raising and coming to understand one child.

I understand why the woman wants to know exactly what my son’s diagnosis is. Or her own child’s. It’s the same instinct that makes Ezra love calendars and movie release dates and running times of films. The world is messy and unpredictable and always changing. We want to give it order and make things fit.

But sometimes you just don’t know. That’s what I told the girl at Friendship Circle: You actually can’t know. So leave the diagnosing to professionals. But what you can do is pay attention to the individual. Observe. Listen. Interact. Instead of struggling to figure out the label, try to seek out the person, the individual, with all of the person’s quirks and behaviors and interests and strengths and weaknesses.

You can’t know the label, so try to know the person.

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