A parent asks: When telling people “my child is on the Autism spectrum,” we’ve debated how to explain it without the stereotype of people thinking our son is “classic Autism.” I dislike the word Autistic (right now), maybe because it’s so new to us. But there are so many different shades of autism. How do we explain he has a mild case and is very high functioning, without sounding like I’m giving people a script or having to explain “what” he is or why he may not do age-typical things or communicate at age level? Saying he has speech delay has worked up until now, but as he gets older, it’s becoming more clear that people in our family don’t pay attention to him or ask about him because they can’t connect with him. So when I get the famous question “how is he doing?” or “how’s he liking school?”, should I give them his latest evaluation at school? It’s nice that they ask but we know they aren’t asking THAT way!

Ellen answers: How to answer the famous question? As is often the case, a child provides the answer. In one of my favorite anecdotes, a young girl came home from a playdate and asked her mother, “Where did I come from?” The mother, having prepared herself for this inevitable moment, launched into a carefully worded version of the birds and the bees. At the end of her speech, her daughter said, “Oh. I just wondered because Sarah says she’s from New York.”

The takeaway from this story illustrates the advice our doctor gave me years ago: answer the question, but don’t offer more than is asked. Your listener will give you cues if they want more information. Sometimes—often—“how are you/how is he?” questions are just small-talk conventions, generic greetings. When someone asks how we are, 99% of the time they don’t want a medical report. I believe we can extend that to most people who ask your famous question; they don’t want a blow-by-blow school report card. Presumably you are keeping those dear to you informed along the way. For others, “He’s doing well, and we’re so pleased. Thank you for asking,” or some variation (“He has a great teacher,” “He loves reading,”) may be all that’s necessary. If someone wants to know more, s/he’ll ask. If they veer into anything you don’t want to answer, have a few responses ready. “We’re keeping that private for now/I’m not feeling like talking about that right now,” or “I don’t have a short answer for you, so how about them Red Sox?” I’m not a fan of snarky answers, but sometimes a pleasant, curious “Why do you need to know that?” stops busybodies.

I would also suggest reflecting a bit on how you frame your son’s autism in your own mind. A few things I note in your message:

  • “…our son is ‘classic’ Autism.” Beware subconscious thinking that your son is his autism. He’s not. He is a whole child; his autism is part of who he is, not all of who he is.
  • What is “classic” autism? You know what you consider to be classic, but others may have no concept at all of the shades of autism. Are adjectives like mild, classic, high functioning necessary? It’s more helpful to people if you can give them concrete descriptions or helpful pointers on how to interact with your child. “Please speak plainly and directly to him, from a short distance. He has trouble understanding instructions called across the room, and he doesn’t understand slang.”
  • You’ve capitalized the word autism. Why? If your son had a cold or the flu or pink eye or allergies, would you capitalize those things? We don’t even capitalize horrible things like cancer, whooping cough, tuberculosis, meningitis. We capitalize Asperger’s only because it’s someone’s name. We talk a lot about how important visuals are to the child with autism. I believe capitalizing the word autism makes a visual statement that grants it authority and power it doesn’t deserve. Don’t let autism be “The Big A” in his life.

The terminology we use to describe our child’s autism is not “just semantics.” It’s a vocabulary that reflects our frame of mind and shapes that of others, as I describe in this excerpt from my book Ten Things Every Child with Autism Wishes You Knew (2012):

“Just as we have to tenderly care for and build these relationships with others, we have to also consciously build a frame of mind and a vocabulary that defines our child’s autism accurately but respectfully. . .

From next-door neighbors to a panoply of professionals, from the friends we choose to the relatives and classmates we can’t choose, everyone who interacts with a child with autism must heed the impact of their words. The words you choose to think of and describe the child and her autism underline your own attitude about her, the role you play in her autism, and about autism in general, whether as an organic thing or as an inert megalith. But larger than that, the belief-powered language with which you describe a child’s autism sculpts what others believe about her and her potential. It frames their expectations, the attitude and manner with which they will interact with her, maybe even their willingness to interact with her. It influences how they will represent her to others.”

You are new to this journey. Remember always that virtually nothing about it is predetermined. You have complete power over what you share and how you share it. It’s a weighty responsibility—and an ever-replenishing fount of opportunity.

 

© 2014 Ellen Notbohm