From: Cynthia Lord <jbcl>
Date: Mon, 16 Oct 2006 21:32:59 -0400

Hi, I sent this message early last Friday morning, but it has never shown up. So I'm trying one last time before we officially change topic.

This was in response to three topics posted at the end of last week: autism, a sibling's burden (or not), and "people-first" language.

--------------------- I do think you will see more books featuring autism in the years to come. Partly because of the success of THE CURIOUS INCIDENT OF THE DOG IN THE NIGHT-TIME, but also, there are simply more children with autism than ever before. When my son was diagnosed with autism about 12 years ago, the statistic quoted was 1 in 10,000. Now, the statistic is 1 in 166.

Personally, I wish authors would approach writing about developmentally-disabled characters with the same hesitancy and carefulness as most approach writing about a culture that is not their own. Otherwise, I think it's hard not to skim off the surface behaviors or challenges and miss the contrast and complexity underneath. There is often anger in the autism community over media portrayals (more often aimed at Hollywood than books, but sometimes books as well) where it seems like a character with autism was used as a device.

I can only speak for myself, but I would hate to see it become a goal of children's literature to hold up as the ideal characters whose disabilities can be forgotten, because they don't matter to the other characters or the plot. That may be possible in some situations, but no one in my household can ever forget about my son's disability. We have to think about it every hour, every time we leave the house, every inch taller and pound heavier that he grows.

If the definition of burden is "a heavy load," then yes, absolutely, my son's autism is a burden for his sixteen-year-old sister. She told me once about a dream she had where I had fallen out of the car and was being left behind (to die! Yikes!) and the driver of the car wouldn't stop. She was embarrassed to admit to me that she pleaded with the driver, "But I will have to take care of my brother without her!"

We joked about how she hadn't worried about me in the dream, but inside my heart broke, and I wished I could've said to her, "Oh honey, you won't have to worry about that." But there will probably come a time in her life where she is her brother's guardian. She is smart enough to know it, and I love her enough not to pretend it isn't the truth. Can you imagine knowing you are already carrying a lifetime responsibility at the age of 12, 14, 16? It changes who you are, I think.

That heavy load exists right alongside joy and humor and great love, though, and that's the complicated part. To live with someone not motivated by social concerns is challenging, but also, often hilarious. My daughter said to my son just yesterday, "You are the only teenager I know who goes into his room to blast music and picks ENYA!" And laughing about that is as real as the hard parts.

I personally like portrayals of autism that show that wide emotional contrast--because it feels real and familiar to me. I knew within a few pages that AL CAPONE DOES MY SHIRTS was written by someone with direct experience with autism. And though not about autism, I felt the same way about TRU CONFESSIONS. Both those main characters love their siblings--and love them "even though" and "even when," which feels very real to me.

"You are not alone" is such a powerful message, and in my experience, the world puts tremendous pressure on siblings of children with autism to be good and kind and understanding. The truth is that books are one of the few places available for some siblings to explore what are often quite complicated feelings. One 10-year-old sibling wrote to me recently, "I was so scared I was the only person who felt this way."

Lastly, on the subject of "people-first language," I think part of the issue is that some terms carry historical baggage with them. "Autistic" carries a hard history with it that "has autism" does not.

Admittedly, "people first" terms get clunky sometimes. You should have seen my editor and I trying to get the jacket flap on RULES to work without using two "withs.". . ."with her brother with autism." It's very imperfect, but I do think a desire to move forward and leave history behind is at the root of many families' preference for the newer terms.

My very best wishes to you all, Cindy

cindy at cynthialord.com Cynthia Lord, RULES
Received on Mon 16 Oct 2006 08:32:59 PM CDT