I met Karl last year. He wanted to ask me a few questions as part of his research. (The crazy mother point of view?) We sat in the lounge of the Algonquin hotel in New York, home of Dorothy Parker's (in)famous Round Table. His father, Josh Greenfeld, wrote three books about Noah in the 1970s and '80s. I borrowed all three from the library and read them before we met. I was appalled at how little has changed in mainstream medicine regarding autism in 30 years.
As an autism Mom (I have three girls on the spectrum), I felt an instant kinship with Noah's mother, Foumiko Kometani, who tried every treatment available at the time -- including the "new" vitamin therapy. She was one of the first Mother Warriors, to borrow Jenny McCarthy's term for parents of autistic children who are unwilling to sit back and let the professionals tell them there is no hope for their child.
But Noah didn't get the fairy tale "HEA," as it's called in fiction -- the "happily ever after." Not all children do. Some, like Noah, don't even come close, despite their parents' Herculean efforts. Children with autism grow up, however, and the reality of full grown adulthood will replace the ability to wrap your arms around your small child and protect him from the world, and himself.
When Noah was born, autism was as exotic as the Dodo bird. Not so today. And yet, we're still in the dark ages when it comes to information. Just last month, an "autism expert" (and neurologist) told Larry King viewers that "autistic people outgrow their symptoms in many cases." Is he kidding? Other professionals with a national platform still deny that there is an autism epidemic at all.
The current awareness campaigns all feature bright eyed, smiling children, usually under the age of six. Early diagnosis has been the push. But what of the adults already here, like Noah? And the kids racing out of their teens and adulthood right now? Boy Alone offers a stark look at the reality many of them face. And it doesn't belong on a Hallmark card.
It took guts to write this book. (And I don't mind telling you, it takes guts to read it.)
Boy Alone is a must-read no matter what your approach to autism treatment, your thoughts on cause or your desire for (or lack thereof) a cure. Even those of us who believe that we can move our kids up (and off) the autism spectrum know that in reality not all of our kids will capture the brass ring. It's an especially important book for teenaged (or older) siblings to help them deal with their mixed emotions.
This week, I'm off to Chicago to speak at a conference called Autism One. The New York Times recently called it "an anti-vaccine conference" in an effort to diminish its importance. This year, Autism One is offering a "Residential Think Tank" with bright minds from around the country.
It's time to stop acting like the grasshopper and become the ants to prepare a viable future for our loved ones. The boy is no longer alone. And neither are my girls.