Late last night I finished the book House Rules by Jodi Picoult. As an Intervention Specialist who works with kids with moderate-intensive special needs (with the most common being autism currently), people have been asking me for weeks if I've read the book yet, if I've started it, if I've heard of it, what my thoughts are...
If I'd known then what I know now, I would've thrown down all the Twilight, Breaking Dawn, Chelsea Bang Bang books and headed right for my hard bound copy of the newest Jodi Picoult that was apparently burning a hole through my book shelf.
I knew two things about this book before reading it. #1 The book is about a boy with Asperger's. #2 Autism Speaks is a fan of both the book and the author.
I was skeptical, only because I know that often books or TV shows depicting kids with autism or Asperger's play on the stereotypes and the splinter skills and the kids who are prodigies or savants. And not all kids with autism and Asperger's are savants. In fact, of the kids I have ever known with autism or Asperger's, not one is a savant, or a prodigy. They are all amazing and interesting and intriguing, and yet, none are the same. None. There's even a saying we have that says "If you've seen one kid with autism, you've seen ONE kid with autism."
I also wonder sometimes about Autism Speaks. While I think they are doing AMAZING things and participate in the yearly Walk Now for Autism in Cleveland and donate regularly, I also wonder if they are on the wrong side of the argument, if any. Do I subscribe to the "Cure Autism" side? Or do I subscribe to the world where there are people with autism and people who are "neurotypical" and neither is bad or wrong and neither should be changed or fixed? I straddle the fence on so many of the issues dealing with autism...
So again, I began this book, House Rules, with skepticism.
The book is set in a small town in Vermont, as told from the perspective of 5 different characters, Jacob, an 18 year old boy with Asperger's syndrome; Theo, Jacob's 15 year old brother; Emma, Jacob and Theo's mother; Rich, the Townsend, Vermont detective; and Oliver, a lawyer who is new to the small town.
Of all the fiction AND nonfiction books I've read about Asperger's, this may be the truest to life. This book may have the best descriptions, show the best emotions, and tell the best "story" of Asperger's that I've ever been able to read.
And as a teacher, I can only know the story and the feelings from one perspective, and I am just so curious, all the time, about the other side, the parents' side. And this book shed so much light on that side.
...while also telling a great story. A controversial story. A story that was, at times, a little hard for me to read. It was hard to swallow. It was a struggle to see some of these words on the pages.
One of the hardest parts of this book, for me, was the incessant use of the "R" word that also runs rampant in our society today. This word, "retard," hurts me to the core. This word that is so loosely thrown around is used by teenagers and by adults and by people who give no thought to what or whom they are referring. And it hurts me. And I always wonder, if a teacher can feel this actual pain, how does a parent feel? A brother? A grandmother?
This next part, that I'd like to quote from the book, seems to take a scene and actively describe the way society still feels about people with special needs. This one simple scene in a book shows me that people like me still have so much work to do.
House Rules page 422- From the perspective of "Rich" the detective:
"The running joke among those of us sequestered for the trial involved the sensory break room. If the defendant can get some special accommodations, why not the witnesses? Me, I want a Chinese food take-out room. I tell this to the DA when she comes to let me know that I'm testifying next...."
"... I'm only half kidding. I mean, if the court was willing to bend over backward for Jacob Hunt's Asperger's syndrome, how long will it be before this is used as a precedent by some career criminal who insists that going to jail will inflame his claustrophobia? I'm all for equality, but not when it erodes the system."
Hmph. I almost can't put words to my feelings after reading that.
And then, later on, a paragraph that means everything to me~
House Rules page 482- Jacob is speaking in court-
"When I first got my diagnosis, my mother was relieved, because she saw it as something that would be helpful. I mean, teachers don't look at kids who are reading eight grade levels above where they should be and doing complex mathematical proofs in third grade and think they need special help, even if they are being teased all the time. The diagnosis helped me get an IEP, which was great, but it also changed things in a bad way." Jacob shrugs. "I guess I expected it to be like this other girl in my grade who has a port-wine stain on half her face. People go right up to her and ask about it, and she says it's a birthmark and that it doesn't hurt. End of story. No one ever asks if they can catch it like a virus, or doesn't want to play with her because of it. But you tell someone you're autistic, and half the time they talk louder to you, like you might be deaf. And the few things that I used to get credit for- like being smart, or having a really excellent memory- were all of a sudden just things that made me even more weird." He was quiet for a moment, and then turns. "I'm not autistic. I have autism. I also have brown hair and flat feet. So, I don't understand why I'm always 'the kid with Asperger's.'"
It's clear that we've got so much work to do. But maybe, just maybe, books like House Rules, are a great starting place for the general population who wouldn't ordinarily educate themselves on the intricacies of a syndrome that can change a family, a school, a community...
Autism Speaks- Official Blog- Talking with Best Selling Author Jodi Picoult About House Rules
Spread the Word to End the Word
Kids Together, Inc.
Skill Building Buddies
Other great books about special needs in story format:
The Curious Incident of the Dog in the Night Time by Mark Haddon
Road Map To Holland by Jennifer Graf Groneberg
Thinking in Pictures by Temple Grandin
Born on a Blue Day by Daniel Tammet